niman

THURSDAY Dr Henry Niman PhD CDC Stats On Severe Lung Disease From Vaping 530 Confirmed Cases Of Vaping Lung Damage Update On Lung Injuries From Vaping The Growing Tragedy Of Vaping Illness

CDC updates https://www.cdc.gov/tobacco/basic_information/e-cigarettes/severe-lung-disease.html#latest-outbreak-information Posted September 19, 2019 at 12:00pm ET CDC, the U.S. Food and Drug Administration (FDA), state and local health departments, and other clinical and public health partners are investigating a multistate outbreak of lung injury associated with e-cigarette product (devices, liquids, refill pods, and/or cartridges) use. Key Facts about E-Cigarette Use, or Vaping Electronic cigarettes – or e-cigarettes — are also called vapes, e-hookahs, vape pens, and electronic nicotine delivery systems (ENDS). Using an e-cigarette product is commonly called vaping. E-cigarettes work by heating a liquid to produce an aerosol that users inhale into their lungs. The liquid can contain: nicotine, tetrahydrocannabinol (THC) and cannabinoid (CBD) oils, and other substances and additives. On This Page Key Facts about E-Cigarette Use, or Vaping What we know What we don’t know What CDC recommends Latest Outbreak Information on Lung Injury Associated with Electronic Cigarettes, or Vaping Map of Reported Cases For the Public: What You Need to Know For Healthcare Providers For State and Local Health Departments Top of Page What we know There are 530* cases of lung injury reported from 38 states and 1 U.S. territory. Seven deaths have been confirmed in 6 states. CDC has received complete sex and age data on 373 of 530 cases. Nearly three fourths (72%) of cases are male Two thirds (67%) of cases are 18 to 34 years old 16% of cases are under 18 years and 17% are 35 years or older All reported cases have a history of e-cigarette product use or vaping. Based on initial data from certain states we know: Most patients have reported a history of using e-cigarette products containing THC. Many patients have reported using THC and nicotine. Some have reported the use of e-cigarette products containing only nicotine. What we don’t know We do not yet know the specific cause of these lung injuries. The investigation has not identified any specific e-cigarette or vaping product (devices, liquids, refill pods, and/or cartridges) or substance that is linked to all cases. Top of Page What CDC recommends CDC has released interim recommendations for healthcare providers, health departments, and the public. Until we know more, if you are concerned about these specific health risks, CDC recommends that you consider refraining from using e-cigarette or vaping products. If you are an adult who used e-cigarettes containing nicotine to quit cigarette smoking, do not return to smoking cigarettes. If you have recently used an e-cigarette or vaping product and you have symptoms like those reported in this outbreak see a healthcare provider. Regardless of the ongoing investigation: Anyone who uses an e-cigarette or vaping product should not buy these products (e.g., e-cigarette or vaping products with THC or CBD oils) off the street, and should not modify or add any substances to these products that are not intended by the manufacturer. Youth and young adults should not use e-cigarette products. Women who are pregnant should not use e-cigarette products. Adults who do not currently use tobacco products should not start using e-cigarette products. Top of Page Latest Outbreak Information on Lung Injury Associated with Electronic Cigarettes, or Vaping As of September 17, 2019 at 5pm, 530* cases of lung injury associated with the use of e-cigarette or vaping products have been reported to CDC from the following states and 1 U.S. territory: AR, CA, CO, CT, DE, FL, GA, HI, IA, ID, IL, IN, KS, KY, LA, MD, MI, MN, NC, ND, NE, NJ, NM, NV, NY, OH, OR, PA, SC, SD, TN, TX, UT, VA, WA, WI, WV, WY, and USVI. These numbers may change frequently. CDC has received complete sex and age data on 373 of 530 cases. Nearly three fourths (72%) of cases are male Two thirds (67%) of cases are 18 to 34 years old 16% of cases are under 18 years and 17% are 35 years or older Seven deaths have been confirmed in California (2), Illinois, Indiana, Kansas, Minnesota, and Oregon. CDC worked with states to create a case definition to classify confirmed and probable cases in a consistent way. State investigators determine if cases are confirmed or probable after examining the medical records of suspected cases and consulting with the clinical care team to exclude other possible causes of illness. Unlike nationally reportable conditions, these cases are requiring clinicians and public health professionals to interview patients to determine product use and individual behaviors. CDC will report numbers of confirmed and probable cases once states have finalized their classification of cases. States are in the process of classifying cases. We expect that states and clinicians may look back for older cases based on CDC’s case definition. All patients have a reported history of e-cigarette product use, and no consistent evidence of an infectious cause has been discovered. Therefore, the suspected cause is a chemical exposure. Based on initial data from certain states we know: Most patients have reported a history of using e-cigarette products containing THC. Many patients have reported using THC and nicotine. Some have reported the use of e-cigarette products containing only nicotine. No consistent e-cigarette or vaping product, substance, or additive has been identified in all cases, nor has any one product or substance been conclusively linked to lung disease in patients. Initial published reports from the investigation point to clinical similarities among cases. Patients reported a history of e-cigarette use and had similar symptoms and clinical findings. These align with the CDC health advisory released August 30, 2019. These investigations are ongoing. CDC will provide updates when more information is available. *The increase in cases from last week represents both new cases and recent reporting of previously-identified cases to CDC. Top of Page Map of Reported Cases

Transcript of CDC Telebriefing: Update on Lung Injury Associated with E-cigarette Product Use, or Vaping Press Briefing Transcript Thursday, September 19, 2019 Audio recording media icon[MP3 – 5 MB] Please Note: This transcript is not edited and may contain errors. Operator: Welcome and thank you all for standing by. All participants will be on the listen-only mode until the question and answer session of today’s call. At that time you can press star 1 to ask a question from the phone lines. I’d also like to inform parties that the call is being recorded. If you have any objections, you may disconnect at this time, and I would now like to turn your call over to moderator KD Hoskins. Moderator: Thank you for all of you for joining us for an update on the update lung injury among people who use e-cigarettes or vape. We are joined today by CDC Dr. Anne Schuchat, principal deputy director, who will provide an update on our support of the investigation. We are also joined today by Mitch Zeller, who is director of the FDA center for tobacco products, and also Dr. Jennifer Layden, chief medical officer and state epidemiologist for the Illinois department of public health. In addition, during our Q&A session today, Dr. Ileana Arias, PhD., senior scientific advisor and acting deputy director for non-infectious diseases at CDC, along with Dr. Brian King, who is the chief science officer for the response, and deputy director for research translation in office of smoking and health. I’ll now turn the call over to Dr. Schuchat. Dr. Schuchat: Thanks so much. Thank you, all for joining us today for this briefing. I’d like to update you on the national public health investigation and CDC’s efforts so far. I want to stress that we at CDC are very concerned about the occurrence of life-threatening illness in otherwise healthy young people reported from around the country. We’re working closely with state and local health departments, FDA, and the clinical community to learn as much as we can to try to stop this outbreak. And I wish we had more answers. We plan to update our national numbers on cases every Thursday but realize this is a very dynamic investigation and we are committed to sharing new key information as it emerges. As of September 17th, 530 confirmed and probable cases of lung injury associated with e-cigarette product use, or vaping, were reported to us by 38 states and one territory. Sadly, seven deaths have been confirmed in and reported to us from six states, California, Illinois, Indiana, Kansas, Minnesota, and Oregon. And we do expect others. As you know, this past Monday, September 16th, CDC activated our emergency operations center. We did this to enhance the inter-agents response and strengthen coordination of this multistate outbreak of cases of lung injury associated with e-cigarette product use, or vaping. This is a complex investigation. It spans many states, involves hundreds of cases, and a wide variety of substances and products. States are classifying cases and reporting them to CDC on a regular basis. CDC is working 24/7 with the states to try to find on answers. I’d like to stress how challenging this situation is, as patients may have been exposed to a variety of products and substances, may not know the contents or sources of these products, and in some instances may be reluctant or too ill to fully disclose all the details of interest. CDC has made it a priority to find out what is causing this outbreak of vaping-related injuries and deaths. As such, we have been working with states and the FDA to collect information about recent e-cigarette product use among patients and to test the substances or chemicals within vaping products used by the patients. And you will hear more about that from Mitch Zeller at the FDA. Although the investigation continues, no consistent e-cigarette or vaping product, substance, additive, or brand has been identified in all cases, nor has any one product or substance been conclusively linked to lung injury in patients. Based on available data to date, nearly three-quarters of the cases are male. Two-thirds of the cases are in people between the ages of 18 and 34 years. 16% are younger than 18 years of age and 17% are 35 years or older. In all, based on what we have to date, more than half of the cases are under 25 years of age. Patients typically report symptoms such as cough, shortness of breath, or chest pain. Some also describe nausea, vomiting, or diarrhea, fatigue, fever, or abdominal pain. As I said, we have not identified the cause of the lung injury in this outbreak. And note that many patients have described use of multiple types of products. Initial published data from select states show most patients have reported a history of using e-cigarette products containing THC. Many patients have reported using products containing THC and products containing nicotine. And some have reported the use of e-cigarette products containing only nicotine. CDC is still working to understand more about the exposures of these patients and if this trend is reflected in the full National picture of cases in addition to the earlier reports. Clearly more information is needed to better understand whether there’s a relationship between any specific products product or substance and the reported lung injuries and deaths. Until we know more, if you are concerned about these specific health risks, CDC recommend that you consider not using e-cigarette or vaping products. If you have recently used an e-cigarette or vaping product and you have symptoms like those reported in this outbreak, we recommend you see a health care provider as soon as possible. Anyone who uses an e-cigarette or vaping product should not use or buy these products off the street and should not modify or add any substances to these products. Regardless of this investigation, certain people should not use e-cigarettes or vaping products. In particular, youth and young adults, women who are pregnant, and adults who do not currently use tobacco products. If you are an adult who is using e-cigarettes containing nicotine to quit cigarette smoking, do not return to smoking cigarettes. Contact your health care provider to discuss the range of evidence-based treatments, including counseling and FDA-approved medications. The e-cigarette or vaping-related lung injuries we have been describing are serious. People are dying. And CDC wants to protect Americans to keep you healthy and safe. We ask you to take these recommendations seriously. Now i would like to invite Mitch Zeller to share more information about FDA’s work so far. Mitch Zeller: Thanks so much, Dr. Schuchat, for those important updates and for the continued strong collaboration between the Centers for Disease Control and Prevention, FDA and our state health partners. FDA continues to work closely with those partners at the federal and state level and as quickly as possible to gather more information about these distressing incidents. In particular, we’re keenly focused on better understanding whether there is a relationship between any specific products or substances and the reported illnesses. As previously noted, there does not currently appear to be one product or one substance involved in all of the cases. For example, in many cases, but not all, patients have acknowledged recent use of products containing THC. Some reported the use of e-cigarettes containing nicotine. Where both THC products and nicotine products. That’s why our work includes collecting critical details about the products or substances involved, where they were purchased and how they were had he being used. Today, I’d like to provide you a snapshot of FDA’s work to help gather as much information as possible about these cases. First in recent, the office of emergency operations activated an Incident Management Group, IMG. This group serves as the agency’s focal point for emergency management and staffed by experts from across the agency. This group also coordinates information gathering and sharing within the agency and between FDA, CDC, and the states. Second, FDA has now collected more than 150 vaping product samples from a number of states for analysis in our forensic chemistry center. And that number of samples continues to grow. FDA is analyzing these samples for the presence of a broad range of chemicals, including nicotine, THC and other cannabinoids, along with opioids, cutting agents or dilutants and other additives, pesticides, poisons and toxins. Please note identifying any compounds present in the samples is but one piece of the puzzle and will not necessarily answer questions about causality, and that remains the focus of our ongoing work. We are leaving no stone unturned in following all potential leads regarding any particular product, constituent or compound that may be at issue. In that spirit, FDA’s Office of Criminal Investigations, or OCI, which is FDA’s law enforcement arm, began parallel investigative efforts shortly after the emergence of the associated illnesses. OCI has special investigative skills, and the focus of their work is to identify what is making people sick, as well as a focus on the supply chain. Let me be clear, OCI is not pursuing any prosecutions associated with personal use of any controlled substances in these cases. Lastly, we understand everyone’s interest in the specifics of FDA’s investigation, and we are committed to providing updates to the public without unintentionally compromising this ongoing active investigation. With that in mind, FDA has set up a landing page on our website at FDA.gov to provide public information about our work, as well as resources for consumers, health care providers, and state health departments. Finally, FDA continues to encourage the public to submit detailed reports of any unexpected tobacco or e-cigarette related health or product issues via FDA’s online safety reporting portal and the Url is www.safetyreporting.hhs.gov. Getting to the bottom of these respiratory illnesses is top priority for all federal and state agencies involved and we are committed to taking appropriate actions as the facts emerge. Thank you all for your time and I will now turn the call over to Dr. Layden. Dr. Jennifer Layden: Thank you, Mitch. I want to start off by thanking our federal partners, the CDC and the FDA, in their leadership for the coordination of this multistate outbreak. Here in Illinois I want to thank the Illinois department of public health director Dr. Ezike to allow us to conduct this investigation, as well as a staff who have worked so hard on this investigation, along with the local health departments and clinicians who have been essential partners in this team effort to identify cases and provide meaningful data to help us identify the cause or causes of these serious illness. This investigation continues to be a top priority for our state. As of today, Illinois is reporting 69 cases, which unfortunately includes one individual who has died. This is up from 52 cases that we reported last week, and we continue to get new reports of cases daily. This is an extremely complex and novel investigation. The patients are quite ill, and case patients are using numerous products and devices prior to becoming ill. No one product or type of products have been definitively linked with these illnesses. Adding to the difficulty is that some individuals are unable to talk with public health professionals because of the severity of their illness or there’s hesitancy about sharing information about the products they have used, especially if they are illicit products. This investigation requires an all-hands-on-deck approach. This is a complicated investigation, and data from states across the country are critical to helping us identify the potential causative substances. In Illinois, and here at IDPH, we continue to use all our available resources to continue with this investigation. To help us identify potential sources, we are asking Illinois residents who have recently vaped to fill out an anonymous online survey about their vaping habits. Identifying differences among people who vape and have become ill and those who have not may help us to advance this investigation. And to facilitate reporting to health departments, we have simplified the reporting form for clinicians and hospitals and we ask them to continue their efforts to report suspect cases to public health. This partnership between clinicians and public health has and will continue to be critically important. And i would like to end, again, by thanking public health officials at all levels and clinicians to for working so hard to identify cases and report to this investigation. Thank you. Moderator: And now, Sarah, we’re ready to take questions. Operator: Thank you. At this time if you would like to ask a question, please ask star 1. You will be prompted to unmute your phone and provide your name. To withdraw your request, press star 2. One moment, please, for the questions to queue up. The first question from Helen Branswell with STAT. Your line is open. Helen Branswell, STAT: Hi. Thanks for taking my question. I was hoping I could ask a couple, please. This is a fairly big jump in numbers. And I’m wondering if you think that’s because now people are retrospectively going back and finding case, or do you think some of this is happening in real-time? And my second question is for Mitch Zeller from FDA. You mentioned the criminal — the Office of Criminal Investigations becoming involved. Can you tell us more about what triggers their involvement in something like this? It seems to imply that somebody thinks something illicit may have been happening? Dr. Schuchat: Thank you, Helen. Let me begin, and then we will turn it over to the FDA. The states continue to get new cases reported in addition to catching up from prior cases. I think this is an ongoing outbreak and not something that we can consider completed. Some of the additional cases that are in the numbers this week are of course from several weeks ago. But there continue to be people with new symptom onset. That is why we are so keen to get the word out to people. If you do have concerns about your health risk, please consider from refraining using e-cigarettes or vaping products at this time. Mitch, would you like to answer the second question? Mitch Zeller: Sure. And thanks for the question about our Office of Criminal Investigations. In cases like this, we typically turn to OCI, as I said in my remarks, because they have special investigative skills, and there are leads to track down. I want to reiterate that, yes, they are the law enforcement arm of the FDA, but they are not pursuing any leads for personal use of any of these substances. These are trained and skilled investigators. And what you’re hearing from CDC, FDA and the states is we are in desperate need of facts and answers to questions. And the trained investigators in our office of criminal investigations typically get involved in cases like this. They have been involved from the beginning because they have unique skills that will help us all get answers to the questions that we’re desperately seeking. Thank you. Moderator: Next question, Sarah. Operator: Our next question comes from Matt Richtel with New York Times. Your line is open. Matt Richtel, New York Times: Guys, thanks for taking my question. Mitch, my first question is for you, and I’m wondering, given that many of the cases you’ve confirmed appear to be associated with THC in some way. Have you considered any enforcement action such as either making it just flatly illegal to sell THC vaping devices or liquid, or those with certain additives which seems to be under your purview under multiple federal law? And, Mitch, is there a reason you have not provided more concrete numbers of percentages given the enormous concern from consumers and industry about the correct behavior to pursue? Mitch Zeller: Well, this is Mitch. I’ll start with your first question, Matt. At this stage in this ongoing investigation, with all of the levels and the layers of complexity that you have heard us all describe, and at this point an ongoing investigation that has way more questions than answers, it’s really premature for me as a regularity to talk about any possible actions or regulatory authorities that could be called into play until we get more answers to these questions and have a better sense of cause and effect for either licit or illicit products. In general, though, when it comes to the enforcement side, there are certain enforcement tools and authorities that could come into play but only down the road and only after we have a much stronger sense of what the causative factors are when it comes to products and substances. And when we have those more definitive answers, then we will be in a better position to answer what is a very fair question, which is how could you possibly use any of your authorities, including enforcement authorities down the road? When we’re in a position to better answer that question, we will. Dr. Schuchat: Yeah, thanks. And let me answer the question about providing more detail about exposures. We absolutely want to do that. We are gathering the data from the states. As you can imagine, it takes a bit more time to get the details of exposures. And as i mentioned, many people have been exposed to multiple products. We don’t want to prematurely reassure people that anything in particular in case it were to turn out to have been quite risky. You know, that has happened before in some outbreaks where we said a certain kind of food and it turned out to be a different kind of food. In this one, CDC hopes to be able to share more details about the exposures that people reported in the near future. Matt Richtel, New York Times: Sorry. Who was speaking there? Dr. Anne Schuchat: Sorry. That was Anne Schuchat. Matt Richtel, New York Times: Thanks. Okay. Thanks, guys. Moderator: Next question, Sarah. Operator: Our next question is from Evan Brown from Fox News. Your line is open. Evan Brown, Fox News: Thank you very much for doing the call. I think my question might echo one that was previously answered. But I’ll try anyway. Is there a belief or what belief do you have that these products may be tampered with in any way? Vaping has been around for quite a while. But it just seems like more recently people are getting sick. Is that — with the involvement of the office of criminal investigations at FDA, is there a belief that something has just gone wrong, or is that no one has really ever looked into this before? Mitch Zeller: This is Mitch. I’ll start. And then defer to colleagues at CDC and Dr. Layden as well if she has perspective from the state level. I think what you’ve heard from all of us on each of the calls that we have done is that there is no consistent pattern when it comes to what product is being used, practice products, plural, are being used, how they are being used, where they might have been purchased, and/or what might have happened to the products along the way from the time that they were put into the hands of the end user to the moment of aerosolization and inhalation. There are multiple ways in which multiple different products have been used. But it’s why part of the advice that you’re hearing from the agencies is be very careful about buying products like this, especially the THC-laced products, off the street. A number of these cases involve THC. And in a jurisdiction where the only way that someone can get their hands on a product like that is literally buying it in an alley or on the street, we’re telling you to be very, very careful about doing that because we are all alarmed by the reports involving THC-containing products even if we don’t have THC present in each and every one of the cases that have presented themselves in the dozens of states that have reported illnesses. And it goes back to the nature of this ongoing investigation. We need to see what common threads emerge as we do the product analysis. As the interviews with the patients continue, and as agencies at the federal and state level put their heads together and try to see what is the primary cause and what might the other causes might be. And we do these calls with you, not because we have brand-new answers to the most important questions, but because we want to update you on where things stand. CDC giving their latest numbers, our role in an ongoing investigation. Because it’s important for you all to be able to accurately communicate to the public what’s known and just as importantly, what remains unknown and uncertain. And I’ll turn it over to CDC and the state at this point. Dr. Jennifer Layden: Yeah. Just quickly, I would say that we don’t know if there’s a single exposure that’s the problem or multiple. So I think the variety of hypotheses are being considered. At this point it’s a national outbreak, and there may be problematic source material or modifications that are occurring in different places. So we really need to use caution at this time in terms of our consumer recommendations and have an open mind in terms of the investigation. Next question, operator? Operator: Our next question comes from Mike Stobbe with Associated Press. Your line is open. Mike Stobbe, Associated Press: Hi. Thank you for taking my questions. If I could ask one for Dr. Schuchat and one for Mr. Zeller and one for Dr. Layden. Dr. Schuchat, you gave us demographics, age profiles and a certain percentage are men. Are the demographics of the cases similar to the demographics of vapors in general? Is it mostly men, most live those age groups, or is it different in some way? Mr. Zeller, could you say a little more generally about what the OCI is doing? Are they interviewing patients? Are they going to certain types of companies and interviewing or asking for records? Dr. Layden, you mentioned sometime that one of the challenges is that individuals may be reluctant to talk. Can you quantify of the 69 cases, how many of those were you unable to get information because the person got sick won’t answer that question. Thank you. Dr. Anne Schuchat: Mike, let me take — this is Dr. Schuchat. Let me take your first question. The demographics of e-cigarette users and the demographics of people who vape other products may not be identical in terms of nicotine versus THC or other things. And we have a higher proportion of male in the preliminary data than you see among e-cigarette users where it’s a little closer. Males have a — are more likely to use e-cigarettes than female in all ages. It is not as big a discrepancy as the three-fourths we are seeing here. I want to caution you that the data numbers continue to come in and the numbers are fluid. I’ll let Mitch do the next question. Mitch Zeller: I certainly understand the interest in more details. But we’re trying to balance the need to be transparent with an appropriate position for a regulatory agency with the law enforcement arm to take. And that is to not discuss the specifics of any ongoing criminal investigation. We’re using all available resources, and that includes our criminal investigators because of the special skills that they have to first and foremost try to identify as quickly as possible what is making these people sick. And it’s — it’s just using the investigative skills and training that our OCI investigators have. Apologies that I can’t go into any more detail than that. Dr. Jennifer Layden: Okay. This is Jen Layden from Illinois. To answer the specific question you asked, I don’t think i can give you an exact percent. What i can see is with time, as the investigation as evolved, we are having more success in conducting interviews with patients. Sometimes it requires numerous calls to get a hold of a patient. And complicating that is they are had he very sick. They have been sick for several days, two weeks by the time we talk to them. So, the recall of what they have used, factoring in they have used numerous products, numerous times throughout the day, it is difficult to identify and recall all the products. But overall, I would say that we have seen reluctance. But with time, and as the investigation continues, there is more willingness for patients to provide information. Moderator: Thank you. Sarah, next question. Operator: Our next question comes from Lena Sun with Washington Post. Your line is open. Lena Sun, Washington Post: Thank you. I have a question for Mitch and a question for Dr. Layden. Mitch, you said that you have now over 150 samples. I think the last one was 120 samples. What else have you found in those samples? Initially you mentioned there was vitamin e acetate. Is that continuing to be found, or are you finding other possible clues? And for Dr. Layden, in the Illinois survey that you’re doing, can you talk — explain a little bit more about how you are reaching people and what you are asking them to do and has that started and what are the results you’re seeing. Mitch Zeller: Well, thanks for the question, Lena. I’ll go first and then turn it over to Dr. Layden. There’s not much more i can add to what was previously said on this. Yes, we are seeing vitamin e acetate in some of the samples. But our laboratory analysis continues to show a mix of results. And there’s no one compound, ingredient, constituent, including vitamin e acetate showing up in all the samples tested. And I’ll just have to leave it at that more general level. Lena, Sun, Washington Post: You said that before, there was vitamin e as state samples. Are you seeing more vitamin e acetate now that you are seeing more samples? Mitch Zeller: I can’t answer that question. Dr. Jennifer Layden: Hi. Jen Layden from Illinois. With regard to our survey, what we are trying to have had is gather more information from people who may also vape but may have not been ill with the goal to compare habits which may help us advance the investigation. We are using social media efforts to try to reach Illinois residents who are using such products. Lena, Sun, Washington Post: Well, are you concerned if they are — if people who have gone sick are reluctant to talk to you because they are worried maybe they will get arrested for using, you know, illicit substances? Are you concerned that you’re going to get people to take you up on this other offer to let you know what they have been vaping? Dr. Jennifer Layden: It is certainly possible. It is an anonymous survey. We are not collecting any patient identifiers in the hopes that individuals will want to help advance this investigation. Lena, Sun, Washington Post: Thank you. Moderator: Next question, Sarah. Operator: Our next question comes from Kathleen Doney with WebMD. your line is open. Kathleen Doney, WebMD: You can’t say what substance to stay away from. Is there an expected timeline for that information to become available or evident? Dr. Anne Schuchat: Thank you. This is Dr. Schuchat again. I know that this is very frustrating for the public and the media. It’s very frustrating for us. This is a complex investigation. And i don’t think that we should expect definitive answers imminently. This may take some time. That said, the state and local public health, CDC, FDA are working around the clock to get as much information and as many answers as we can soon. This may turn into finding multiple issues that are of concern rather than a single product or substance. And so we ask for your patience. In the meantime, if you are concerned about these health risks, we recommend up consider refraining from using e-cigarettes or vaping products. Thank you for joining us and thank you for participating in the call. I believe that was the last question. Moderator: and if any reporters have follow-up questions, you can call us at 404-639-3286 or email us at [email protected]. This concludes our call. Operator: Thank you. Once again, that does conclude today’s coverages. Thank you all for participating. You may disconnect your lines at this time. https://www.cdc.gov/media/releases/2019/t0919-lung-inury-vaping.html

Missouri announces state's first vaping-related death Man in his 40s died this week at a St. Louis hospital 406 Shares Updated: 5:38 PM CDT Sep 19, 2019 KANSAS CITY, Mo. — A Missouri man in his mid-40s died this week in St. Louis due to an illness associated with the use of e-cigarettes, the Missouri Department of Health and Senior Services announced Thursday. This is the first vaping-related death in Missouri and the eighth nationwide. DHSS said it concluded it was a vaping-related lung injury after lung samples were taken of a patient who had a history of vaping but normal lung function prior to starting vaping in May 2019. Authorities said the man developed mild respiratory symptoms that worsened, leading to hospitalization on Aug. 22 before being transferred to Mercy St. Louis on Sept. 4. “This is an unfortunate case of a young man with no prior lung illness who started vaping because of chronic pain issues,” said Dr. Michael Plisco, Mercy critical care pulmonologist and medical director of Mercy’s extracorporeal membrane oxygenation (ECMO) program. “He started out with shortness of breath and it rapidly progressed and deteriorated, developing into what is called acute respiratory distress syndrome (ARDS). Once the lungs are injured by vaping, we don’t know how quickly it worsens and if it depends on other risk factors.” Authorities said the man’s lungs were unable to provide enough gas exchange, leading to heart failure and near cardiac arrest. Investigators have not yet determined if he was vaping THC, according to a spokeswoman at Mercy Hospital St. Louis. https://www.kmbc.com/article/missouri-announces-states-first-vaping-related-death/29133442#

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Photo illustration by Slate. Photos by Rawpixel/iStock/Getty Images Plus; vladystock/iStock/Getty Images Plus. This article is part of Future Tense, a partnership of Slate, New America, and Arizona State University. On March 20, Future Tense will host an event in Washington, D.C., about how law enforcement is using genetic genealogy—thanks to consumer DNA testing—to solve crime. For more information and to RSVP, visit the New America website. Imagine the federal government enacted a law requiring all U.S. residents to provide law enforcement with their DNA profile so police could solve more crimes. Would you be OK with such a system? Imagine instead that the federal government established a database for which people could volunteer genetic profiles—but that the decision about whether to volunteer your DNA belonged not to you, but to your third cousin. Would you be OK with that? Whether you like it or not, the United States has effectively already adopted this second system. Since April 2018, law enforcement investigations stemming from DNA searches in consumer genetics databases have led to nearly three dozen arrests. In every case, those ultimately arrested did not actually upload their own genetic profiles to any database. Rather, they were identified through partial matches between crime scene DNA samples and the genetic profiles of often-distant relatives shared on consumer platforms like GEDmatch or FamilyTreeDNA. By one estimate, more than 60 percent of Americans of European descent are already identifiable through the DNA of a third cousin or closer on one of these platforms, and nearly all such Americans may be findable soon. Meanwhile, Parabon Nanolabs, the leading private company selling genetic genealogy services to law enforcement, claims that it can identify criminal suspects out to ninth-degree relatives (e.g., fourth cousins)—widening the genetic web of indirect database inclusion still further. Law enforcement use of consumer genetics platforms in this way amounts to a massive failure of democratic accountability. While resolving cold cases and bringing wrongdoers to justice is laudable, forensic genealogy’s reliance on matches between genetic relatives should prompt serious questions about whose identifying genetic data is included in law enforcement searches and with what justification. Unless we change course, the United States will soon be home to a de facto national DNA database—something that no U.S. jurisdiction has suggested would be appropriate. Existing genetic databases typically come in one of two types. One is traditional law enforcement DNA databases: Every state and the federal government has enacted legislation identifying whose DNA is subject to government collection and search for crime detection purposes, and each has limited its database to some subset of individuals arrested or convicted of crimes. While these databases have grown in size and scope over time, no state has proposed using DNA from most or all of its residents for law enforcement purposes. Rather, each jurisdiction has affirmatively chosen to limit who can be included, even requiring expungement of DNA profiles in certain instances. The second type of DNA database used for law enforcement is a new entrant—the consumer genetics platform. To date, at least two consumer genetics platforms, GEDmatch and FamilyTreeDNA, have publicly acknowledged or embraced working with law enforcement to identify criminal suspects. Proponents of government use of these databases have emphasized that genetic profiles are voluntarily shared on these sites. In other words, because people have volunteered their genetic data, it is OK for law enforcement to use it too. But the identification of individuals who are not directly included in a genetic database runs afoul of any given reason law enforcement use of such databases is legally and ethically acceptable. These individuals have not previously been arrested or convicted of a crime. Nor have they “volunteered” their DNA on a consumer genetics platform. Instead, like millions of ordinary Americans, these individuals are identifiable to police through the genetic data of their kin. Few genetic relationships, however, are voluntary. Even if parents can be said to voluntarily choose to have children, children plainly do not choose their parents. Nor do we choose our siblings, cousins, or more distant relatives—if we even know who they are. And the reach of these genetic databases, combined with identifiability-by-relatedness, is rapidly growing. Law enforcement will soon have access to enough genetic profiles to reach nearly all Americans of European descent, if they don’t already. As one expert has explained, law enforcement would need access to DNA profiles for as little as 2 percent of the U.S. population (about 4 million profiles) to reach nearly any of us with European ancestry through a third cousin or closer. Meanwhile, as many as 26 million individuals have already used an at-home genetics test. Law enforcement use of consumer genetics platforms in this way amounts to a massive failure of democratic accountability. That is a problem. A comprehensive genetic database is unlikely to be a viable policy proposal, and with good reason. For one thing, despite apparent public support for investigations like the Golden State Killer case, Americans are very concerned about genetic privacy. A recently proposed bill in Arizona that would have radically expanded the state’s official DNA database lasted mere weeks, before being substantially amended twice in a 72-hour period. The legislation would have required that DNA be collected from “anyone who has to be fingerprinted by the state for a job, to volunteer in certain positions or for a myriad of other reasons.” (The text of the original bill can be found here.) It had ignited widespread opposition, including from the Arizona Police Association. The bill was quickly amended twice, ultimately focusing on advancing the use of Rapid DNA technology to test rape kits. Having been hollowed out and replaced with different, less objectionable content, the bill passed out of committee. In other words, a bill that appeared to approach the model of a comprehensive DNA database available for law enforcement use met a swift and ignominious death, abandoned even by its sponsor. More broadly, no state to date has proposed storing the DNA of all its residents in a law enforcement database. Moreover, such a database might not even be legal. As I have argued elsewhere, identifiable genetic information is precisely the sort of sensitive data in which individuals ought to have a reasonable expectation of privacy. That means that a comprehensive DNA database for law enforcement use may well run afoul of the Fourth Amendment of the U.S. Constitution. If Americans are unwilling to accept a formal national DNA database, they should not accept what amounts to the same thing by happenstance. Yet that is where we are headed. There is another way forward: Prohibit law enforcement searches of DNA databases that seek to implicate individuals whose genetic information is not directly included. Doing so would limit law enforcement access to those who really do fit the rules for database inclusion, whether by virtue of an arrest or conviction or by their voluntary sharing of genetic data. To be sure, such a solution would make crime solving more difficult. But it would also prevent millions of ordinary Americans from involuntarily and unjustifiably coming within the scope of the state’s genetic surveillance, while ensuring greater public accountability about the means and ends of law enforcement. In Maryland, such a law has already been proposed. Maryland has long been a leader in including meaningful limitations to protect ordinary individuals against routine DNA searches for crime detection purposes. Most significantly, in 2008 Maryland prohibited familial searchesin the state’s own database. In January 2019, Del. Charles E. Sydnor III introduced a bill that would extend that prohibition to reach any DNA database, including those hosted by consumer genetics platforms. Although this bill has not advanced, Sydnor has not abandoned its intent. He hopes to educate his fellow House of Delegates committee members on the topic, as part of a conversation about appropriate law enforcement use of genetic technology. It’s a conversation that needs to take place nationwide. Future Tense is a partnership of Slate, New America, and Arizona State University that examines emerging technologies, public policy, and society.

The U.S. May Soon Have a De Facto National DNA Database We need to close the loopholes that allow law enforcement to take advantage of consumer genetics. By NATALIE RAM https://slate.com/technology/2019/03/national-dna-database-law-enforcement-genetic-genealogy.html

Tonight 11 PM EDT Dr. Henry Niman PhDUS Will Soon Have A National DNA Database

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Tonight at 10 PM ET Dr. Henry Niman PhDAnother Criminal Caught With DNA

Illumina Furnishes Genotyping Array, NovaSeq 6000 to NIH's All of Us DECEMBER 7, 2018 Illumina said it will provide a new high-density genotyping array and its NovaSeq 6000 Sequencing Platform (pictured) to the NIH’s All of Us Research Program, for use by the three genome centers that were awarded a total $28.6 million to generate and analyze genetic data for the research cohort piece of the Precision Medicine Initiative (PMI) designed to glean health and wellness data from 1 million or more Americans. [Illumina] Illumina said it will provide a new high-density genotyping array at no charge to the NIH’s All of Us Research Program. RELATED CONTENT The sequencing giant’s Infinium Global Diversity Array will enable the processing of up to 1 million samples by the three genome centers that were awarded a total $28.6 million from All of Us in September, Illumina said. All of Us is the research cohort piece of the Precision Medicine Initiative (PMI) designed to glean health and wellness data from 1 million or more Americans. “This contribution to the selected All of Us Genome Centers will allow the program to accelerate the unprecedented effort to complete genotyping and sequencing for all 1 million or more people who participate in the program,” NIH Director Francis S. Collins, MD, PhD, said in a statement. The new array will be a high-density chip that according to Illumina has been designed to enable achievement of the primary genotyping-based goals of the project. Those goals include unparalleled coverage of a highly diverse cohort and the ability to return results to participants such as those indicated by the American College of Medical Genetics and Genomics’ ACMG-59 Gene List—the set of 59 genes known to be associated with risk of diseases amenable to prevention or early diagnosis—and key pharmacogenomic variants. Some of these genes are associated with potentially life-threatening health conditions, ranging from familial hypercholesterolemia, to breast and ovarian cancer. The array will become commercially available for others to use in mid-2019. In addition to the new genotyping array, the genome centers will use Illumina’s NovaSeq 6000 Sequencing Platform to conduct whole genome sequencing for the All of Us Research Program. ‘Landmark Initiative’ “This landmark initiative will build awareness of the unprecedented benefits that DNA sequencing can have on improving the human condition,” stated Illumina President and CEO Francis deSouza. “It is an innovative program that will contribute to driving down the cost of sequencing, while further unlocking the power of the human genome.” The NIH has designated three All of Us Research Program Genome Centers: A partnership of Baylor College of Medicine, Johns Hopkins University, and The University of Texas Health Science Center at Houston (UTHealth). A partnership of The Broad Institute of MIT and Harvard, Color Genomics, and the Laboratory for Molecular Medicine at Partners HealthCare. Northwest Genomics Center at the University of Washington, Seattle The genome centers are expected to produce genome data for researchers, as well as analyze data for genetic results to be responsibly returned to participants who are interested in receiving them. The NIH has committed All of Us to becoming the nation’s largest and most diverse research cohort, with plans to “oversample” communities underrepresented in research in the past. “A core value of the All of Us Research Program is to reflect the rich diversity of the United States. Including people who have been underrepresented in biomedical research will help researchers understand existing health disparities and ensure that everyone can benefit from future breakthroughs,” added Eric Dishman, director of the All of Us Research Program. https://www.clinicalomics.com/articles/illumina-furnishes-genotyping-array-novaseq-6000-to-nih-s-all-of-us/2039

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Tonight 10 PM ET Henry NimanThe NIH 'All Of Us' Genome Program Ready To Blast Off

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To Solve Cold Cases, All It Takes Is Crime Scene DNA, a Genealogy Site and High-speed Internet 19 long-pending murder and rape cases have been solved over the past year in the U.S. using a DNA database created by two genealogy enthusiasts. An Israeli scientist warns genetic information could soon be abused if the practice isn't reined in By Yarden Michaeli Nov 15, 2018 One day last July, two police officers paid an unexpected visit to the home of John D. Miller, 59, in the town of Grabill, Indiana. Finding Miller outside his house, where he lived alone, they asked him to accompany them. Miller, gray-haired and with a slight weight problem, didn’t resist. Not until they arrived at the police station, about a half-hour’s drive away, did the officers ask him if he knew what they wanted to talk to him about. Miller, the police report states, looked at the detectives and said, “April Tinsley.” He was right. Tinsley, a blond, smiling girl of 8, disappeared in the spring of 1988. She left the home of a girlfriend and vanished. Police were called in immediately, and three days later, a passerby came upon her body lying in a ditch about 20 miles from her home. She had been sexually assaulted and then strangled. Traces of the suspect’s DNA were found on the girl’s underwear, but the killer was never caught. April Tinsley. The case of April Tinsley became a cause célèbre in the United States. Off and on, over three decades, a team made up of personnel from the FBI and other federal agencies checked tips and examined numerous scenarios. The popular television program “America’s Most Wanted” devoted an episode to the murder in 2009, and in the internet era bloggers reported on developments in the case. And developments there were. About two years after April’s death, police were called to a barn not far from where Tinsley’s body was found. Scrawled on the door was a message: “I kill 8 year old April Marie Tisley… ha ha I will kill agin [sic].” In 2004, used condoms were found hanging from three separate girls’ bicycles in Fort Wayne, not far from Grabill, along with ominous notes: “Hi honey… I been watching you… I am the same person that kidnapped an rape an kill april tinsley... You are my next victim.” But the killer didn’t strike again. In fact, that was the last time he was heard from. The investigation hit a dead end. But then, early last May, 30 years after the murder, Virginia-based Parabon NanoLabs, which was working in tandem with CeCe Moore, a genetic genealogist, approached the Fort Wayne police, offering their services in investigating the case. Within a few days, they received authorization from the police to upload a DNA sample from the murder scene to GEDmatch, a genealogical site created by two enthusiasts from Florida and Texas. From there things moved quickly. All in all, Moore said, “It was rough. Afterward I was just totally beat. But I was determined to find him.” Over the years, the police had narrowed down the list of possible suspects to about 100, but Miller, a recluse, wasn’t one of them. But Moore’s methods don’t require interviews with neighbors or potential witnesses. She compares DNA profiles uploaded to the web and reduces the number of potential suspects with the aid of other, open databases. It’s painstaking work but it can produce results relatively quickly – certainly when compared to three decades of fruitless searches. Within 50 days, Moore gave police the names of two brothers. One of them, she said, speaking with Haaretz by phone, was their man. “It was challenge after challenge,” she said. “When the threads finally converged in Indiana, I knew I had got him.” The note found on a barn door not far from where April Tinsley’s body was found, two years after her death. An arrest warrant requires evidence that’s admissible in court, so detectives scoured Miller’s trash for DNA samples and found what they were looking for in three used condoms. At the station, the police told Miller that they had two DNA samples – one that was his, the other from the crime scene. And they match, he was told. Miller didn’t argue. That same day he confessed that he had kidnapped April Tinsley, raped her in his trailer and then strangled her to death so she wouldn’t tell anyone. He said it took him about 10 minutes to kill the girl. “It’s amazing,” Detective Brian Martin, who heads the cold cases unit of the Fort Wayne police department, told me, in a phone interview. “We were able to do in less than 60 days what we were not able to do in 30 years. He was out there living in our community and we had no idea about him.” Double murder In the past year, genealogical search engines have been used to solve complicated murder and rape cases, ones that had stumped police in the United States for decades. Vast sums had been spent on investigations, generations of detectives toiled on the cases, and the victims’ families lost hope. Until CeCe Moore entered the picture. Moore, who was born in 1969 and previously performed on stage as an actor and singer, cracked the overwhelming majority of cold cases that were solved – within six months, and usually without even leaving home. All she needs is DNA from the crime scene, access to the GEDmatch site – which allows people who are searching for relations to upload DNA profiles at their own initiative – and a fast-internet connection. The secret to unraveling the April Tinsley case, and many others like it, lies in the integration of tools from the realms of both genealogy and genetics. Genealogical research is a form of historical detective work that’s based on population records; media reports; marriage, birth and death certificates; archival research and so on. But recent developments in DNA-based technology have expanded the horizons of possibilities: Labs can now pinpoint information about familial origins and links for people even if they lack access to conventional documentation and records. Moore’s gateway to the world of genealogy was a family tree she decided to create as a wedding present to a niece. Subsequently she became a well-known figure in the world of genealogy. She has helped draft ethical rules for proper usage of data, has often appeared on television to explain what she does, and she manages a Facebook group of 100,000 people, by means of which she teaches followers how to become “genetic detectives” and locate previously unknown relatives. “I mostly worked with unknown parentage cases in the last few years,” she says, “helping people find their biological families when they don’t know who they are.” However, the challenge in such efforts eventually wore off. At some point, Moore came up with the idea using GEDmatch to try to solve cases of unidentified crime victims. That prepared her for the moment when she began to help law enforcement agencies, in partnership with Parabon NanoLabs, which specializes in DNA technology and had already been hired to help such authorities. The results were not long in coming. Last June, police in Pennsylvania arrested Raymond Rowe for the rape and murder of Christy Mirack, a schoolteacher, in 1992. That same month, Gary Hartman was arrested in connection with the rape and murder of 12-year-old Michella Welch in Tacoma, Washington, in 1986. A month later, police in Utah used GEDmatch in investigating a more recent case: Spencer Monnett was arrested for the rape of a 79-year-old woman 14 weeks earlier. And the so-called “Ramsey Street rapist,” who had perpetrated serial assaults in Fayetteville, North Carolina, from 2006 to 2008, was identified as Darold Wayne Bowden, a white man with a large swastika tattooed on his chest. See Kobi Haschen's other Tweets Twitter Ads info and privacy All told, 19 cases were solved in this way, 17 of them by Parabon NanoLabs and CeCe Moore, the other two by different detective teams. Not one of the detainees had been considered a suspect. One of the most complex cases Moore dealt with was that of the double murder of Jay Cook and Tanya Van Cuylenborg. The young couple from Canada – she was 18, he was 20 – was murdered in November 1987. The two were on their on their way to Seattle from Saanich, British Columbia, in the Cook family’s 10-year-old Ford Club van. They set out on November 18, and the last time they were seen was when they bought tickets for the ferry to Seattle, a little after 10 P.M. that day. Five days later, Van Cuylenborg’s body was found in a wooded area in Skagit County, Washington; she had been raped and shot in the head. The next day, the empty van was found, and a day later all hope was lost when Cook’s body was located in a neighboring county, wrapped in a blue blanket. Jim Scharf, the detective who worked on the case in Snohomish County, Washington, said at the time of the arrest that over the years the police had received tips in connection with more than 350 people who might have been involved in the murders, but that none had shed any light on the events. It took Moore just three days to give the police the suspect’s name. Moore uploaded a DNA sample from one of the crime scenes to the genealogical search engine of GEDmatch. She was able to identify two distant relatives of the murderer, and with the use of traditional genealogical methods traced ancestors who were common to the suspect, and to every one of the relatives who had been found. At this stage, she started to build a family tree forward in time – in other words, she began to identify all the descendants of the ancestors right up to the present day and to clarify the relations between them – in a process known as “reverse genealogy.” The aim is to locate a descendant of the ancestor who matches the presumed suspect’s profile. “The significant matches were at about the second-cousin level,” says Moore, adding, “I built family trees of people who were sharing DNA with the perpetrator, back to great-grandparents.” It’s here that the significant difference from previous investigative methods lies, and where ethical problems arise. The search is not for the actual criminal – it’s unlikely, for example, that a serial rapist will upload his DNA to an open database – but for people who may have a certain genetic relationship to him but who may not even be aware of those ties and/or the suspicions against him. Moore has perfected this technique, and her recent successes have kept her very busy. Two months were needed to arrange an interview with her, but in the end she explained her work method to me, in a phone interview. The starting point – the degree of the connection between the crime-scene DNA and the match on GEDmatch – is critical. This is because GEDmatch does not reveal the exact family relationship between the target of the search and the database, but offers a range of possibilities. “For any amount of shared DNA, there are multiple numbers of possible relationships,” Moore notes. “It could be a second cousin. It could be a second cousin once removed, a first cousin twice removed,” and so on. Accordingly, Moore must first make an intelligent prediction of the nature of the connection between the suspect’s DNA and the results from the website. Most GEDmatch users upload their genetic information together with their full name and email address. Thus, when Moore identifies the correspondence bearing the strongest family relationship to the murderer or rapist, she has something substantial to work with. In the case of the Canadian couple, Moore related that the family trees of two of the closest results did not share DNA. In other words, she knew that the place where the two trees overlapped would point to the killer. In fact, she discovered that the two trees converged in a marriage that produced one son. At that moment she had cracked the case: Last May, a 55-year-old man, William Earl Talbott II, was arrested for the two murders. Talbott denied the charges, but the police are certain they have the right man. He was 24 in 1987, apparently lived about 35 kilometers from Seattle, and fresh DNA samples taken from him match the DNA found at the scene. “If it hadn’t been for genetic genealogy, we wouldn’t have been standing here today, and if it hadn’t been allowed to be used in law enforcement, we would have never have been able to solve this case,” Detective Scharf stated in a press conference called to announce the arrest. Retiring detective The reason that all these suspects were caught with the aid of GEDmatch and not through the FBI’s DNA database, known as CODIS, is related to the technology underlying each. CODIS has 17.6 million profiles, far more than the one million of GEDmatch, but the FBI’s goal is to compare samples and find a full match between them. This is accomplished by comparing short sequences called STRs (short tandem repeat) at about 20 locations along the genome. What it can’t do is identify with high probability ties between family members who are not first-degree relatives. The commercial companies, and thus also GEDmatch, use tests that examine genetic variants called SNPs (single-nucleotide polymorphisms) at 600,000 to 700,000 points on the genome. This technology makes it possible to detect distant family ties, and it’s precisely here that the sleuthing of amateur genealogists intersect with Moore’s skills and the world of criminal identification. According to Dr. Steven Armentrout, the founder and CEO of Parabon NanoLabs, it’s difficult to calculate accurately the size of the net that GEDmatch casts. However, he says, 55 percent of the DNA profiles that Parabon has uploaded to GEDmatch since May have to date produced a lead sufficient to work with. His company, he notes, cooperates with law enforcement authorities across the United States and has so far uploaded about 200 DNA profiles. Moore was not the first to use GEDmatch to solve murder cases. Its use began last April, with the arrest of Joseph James DeAngelo – the so-called “Golden State killer,” suspected of murdering 13 people and raping more than 50 women in California between 1974 and 1986. Paul Holes, now a retired detective from the office of the Contra Costa County’s district attorney, spent 24 years pursuing the serial killer and rapist. When he was only months away from retirement, he decided to upload the DNA profile of the killer to GEDmatch. What happened next could have been taken from a true-crime movie. The day before he was slated to turn in his badge and pistol, Holes found himself outside the home of a person named Joseph DeAngelo, wondering if he should simply knock on the door. He needed a DNA sample for comparison to the one that had been collected at one of the murder sites. Holes ended up outside DeAngelo’s home after four months during which his team built family trees: On the basis of matches of second and third cousins, via GEDmatch, a team of five investigators, aided by genealogist Barbara Rae-Venter, put together a genealogical chart going back to the 1840s. On that day, the eve of his retirement, Holes saw DeAngelo only as a possibility, albeit an interesting one. In the end, however, he decided to leave without speaking to the suspect. Paul Holes. Dedicated 24 years to catching the Golden State Killer. From the KTVU Youtube channel “I realized I didn’t know enough about him. If I had knocked on that door, things could have turned bad,” he told me in a conversation from his home in Colorado. Holes’ experience exemplifies the fact that genetic genealogy is not a substitute for traditional police work. If he hadn’t gone on questioning witnesses, looking for DNA samples and seeking patterns in the killer’s mode of operation, the requisite evidentiary foundation for embarking on the final stage in the hunt for the killer would probably not have existed. “This is obviously a revolutionary technique,” Holes said. “But it won’t solve every case; nor should it be used in every case. It’s really almost like a last-resort tool.” Anne Marie Schubert, the district attorney of Sacramento County in California, where DeAngelo, now 73, will face trial, also used the term “revolutionary” when I spoke to her about genetic genealogy. Today Holes attends conferences of detectives and investigators, where he advises his former colleagues on the potential uses of genetic genealogy in their work. Murderer’s daughter The cofounder of GEDmatch, the internet tool that deserves credit for the recent wave of murder-case solutions, is Curtis Rogers, 80, a professional court-appointed legal guardian from Florida. GEDmatch founder Curtis Rogers. Until it emerged that his search engine had helped bring about the arrest of the Golden State killer, he had no idea that police were even using it. Rogers told me that reports of the suspected serial killer being arrested made him slightly suspicious. “I wonder if we were involved,” he said to his wife that day, April 25, which by chance also happened to be International DNA Day. The answer came a day later, when he arrived at his office and found TV-broadcasting vans waiting outside. “It came as a big surprise, no question,” he said, although it was clear from his tone that the initial astonishment had passed and that he’s now proud of his role in solving the cases. Rogers founded GEDmatch in 2011 together with John Olson, 67, an electrical engineer from Texas. Rogers still works almost nonstop, he says, but recently decided to retire from his day job and devote himself full-time to the website. The basic idea of GEDmatch is simple. A commercial breakthrough in 2009 – the sale of autosomal DNA tests directly to the public – enabled genealogists to locate living relatives and not only those who died long ago, as earlier techniques had made possible. “Suddenly you had this mass of people you knew you were related to,” Rogers says, adding that the enthusiasts began bombarding each other with emails in order to decipher the family ties between them. The process was long and tedious, and Rogers asked Olson to build an algorithm that would computerize the search. The two developed what turned out to be GEDmatch, and decided to invite the world to use it. There are significant differences between GEDmatch and similar, commercial sites. First, Rogers and Olson offer their service for free, apart from a few features that cost $10 a month. The two men obviously operate the site out of love for genealogy. They also do not do DNA testing and don’t have a lab. Instead, users upload to their site the genetic data they have received from commercial testing firms. GEDmatch also makes it possible to upload DNA sample from every one of the firms, provided it comes in the right type of file, and to compare profiles, something that cannot be done in the case of people who were tested by different companies. In addition, the commercial firms have a tough policy about opening their databases to legal authorities. The 23andMe genetic testing service, for example, reported that it had rebuffed all five requests it received from authorities for information. GEDmatch, however, is open to all, including law enforcement agencies. “We realized quickly that we have no control over that. Law enforcement can put the information on our site and we would never know,” Rogers explains. Accordingly, he and his partner revised the site’s terms of use, and announced that they would allow the police to use it only for solving rape and murder cases. According to Rogers, visitors to the site were now apprised that the authorities had access to it and that they were invited to delete their information if they wished. “We became very open and honest, and we try to educate our people that that’s a possibility,” he says, referring to the possibility of law enforcement using the site. Rogers was apprehensive about users’ reactions, following the arrest of the Golden State killer. After all, though the police were already using the site, those who had uploaded their DNA profile weren’t necessarily aware of that. So he was relieved to get many messages of support. One of the more dramatic examples of such support came from Carol S., whose father murdered her grandfather in Detroit in 1979. Carol’s father had been in and out of mental institutions throughout his life. She told me that he had been tried for his father’s murder, found insane and sent to an institution again, this time for a lengthy period. “I felt and I do feel that my father was responsible for many crimes,” she related. “I asked [the site]: How do I make sure that my GEDmatch profile is available publicly for law enforcement purposes.” She hopes her decision to allow the authorities to access her DNA profile will bring some comfort to victims’ families: “Suffering when your loved one is murdered is hard enough, and that’s why I feel it’s so important,” she says. CeCe Moore wasn’t involved in the Golden State killer case, but the way it was solved made her uneasy, too. She now accepts Rogers’ new policy, and thinks that the major publicity the case received has changed users’ perception of privacy. “Once everyone in GEDmatch was made aware that their data might be used that way, it really gave me the freedom to do my work,” she notes. According to Moore, in light of the worldwide publicity the Golden State killer case has received, it can be assumed that everyone whose information appears on the GEDmatch site has voluntarily technically consented to allow the authorities to use it. Some experts dispute that and say that legal problems are liable to arise. But for CeCe Moore and GEDmatch, the decision has already been made. “I had a lot of sleepless nights, when a district attorney would write to me asking for help in catching this serial killer, who might kill more people. I know I have the skills to do it, and it was very painful to have to say no” for ethical reasons, Moore relates. Local angle Last October, the journal Science published a study done by a team headed by Prof. Yaniv Erlich, chief science officer of the Israeli company MyHeritage (also involved in the research were Dr. Shai Carmi, Prof. Itsik Pe’er and Tal Shor). The online genealogy platform, known here mostly thanks to the family trees that can be created through it, also has a genetic testing unit. In the wake of developments in America, Erlich and his team examined the genomic data of 1.28 million people and “project that about 60 percent of the searches for individuals of European descent will result in a third cousin or closer match,” according to the study. This figure is in keeping with the data reported by Parabon, and the MyHeritage team estimates that the number would rise considerably, as more people upload their profiles to GEDmatch. They also predict that with the aid of genealogical tools, it will be possible to locate almost every one of the search targets In regard to Israel, Erlich told me that the MyHeritage genetic database includes only a few thousand Israelis, because regulations bar companies here from offering genetic testing for “recreational” purposes. The company, he says, will go to court to fight any order to open the database to the police, though that hasn’t yet happened. GEDmatch is of course accessible to the Israel Police, but is not especially useful as long as no Israelis are availing themselves of it. Asked about the services it may take advantage of in its work, the Israel Police told Haaretz that it doesn’t not answer questions about investigative procedures or cooperation. Moore had reservations about the unequivocal character of the study that was reported in Science. In most cases, she says, it’s quite difficult to create a family tree and locate a target person. Adoption, migration, endogamy, common names, restrictions on document access or cases in which the biological parentage is ascribed to the wrong person – all these make it hard to follow the elusive DNA trail. Dealing with the April Tinsley case, with many variables, was “like fighting a battle through a dark jungle,” she recalls. In any event, the study has stirred considerable interest in the U.S., where DNA databases are springing up rapidly. All together, the large commercial genealogy companies have about 18.5 million profiles. Haaretz was told by 23andMe that it has more than 6 million, Ancestry.com claims to hold 10 million, and MyHeritage reports 1.4 million DNA profiles. Family Tree DNA didn’t respond to an inquiry, but reports indicate that it has another million profiles. According to GEDmatch’s Roger Curtis, half of their million profiles are from the United States and the others from elsewhere around world, and the database is growing at the rate of 1,000 to 2,000 new users per day. The question now is: What’s next? As things stand now, anyone with the means and the right skills can utilize GEDmatch to locate people of interest. Theoretically, both individuals and authorities in foreign countries will be able to do the same when the database contains profiles of enough of their citizens. The question of what will prevent U.S. authorities from exploiting the information in other cases – with respect to drug or property offenses, or, pessimists worry, even to track down holders of particular political views – remains unanswered. Is it a good thing that at police stations across the United States they are gradually building maps of people’s family relations, including relatives of whose existence those people are unaware? Prof. Erlich, from MyHeritage, noted that the motivation behind the study his team conducted was the desire to draw the world’s attention to the developments in the realm of genetics and to offer solutions for supervision and legislation that will protect users’ privacy. We are only at the start of a revolution in genetics, says Erlich, who predicts that entire population groups will undergo genetic sequencing. “What’s happening now is the building of the foundations for the future, which will serve us for the coming decades.” Cynics might detect an economic threat to the commercial companies if the police suddenly depart from the limits of the public consent they received because of the Golden State killer case, and the advantage MyHeritage may have in being seen as a leader in the struggle for privacy. Still, it’s impossible to ignore the fact that information databases leak, that DNA is a powerful tool and that Erlich’s comments carry weight. “There are huge companies in Silicon Valley that say the writing was on the wall for years and nothing was done,” he notes. “So, if the writing is on the wall, let’s be practical and try to see how we can help this field and move it forward. What we’re trying to say is that it’s not too late yet.” One idea proposed by Erlich and his colleagues is to develop a cryptographic key that will mark every DNA test carried out by one of the large commercial companies, and to have GEDmatch accept only profiles with that marking. Anyone who tries to upload an unmarked profile will have to answer questions relating to his identity. Another idea is to impose restrictions on law enforcement authorities when they try to collect genetic information. Echoes of Erlich’s forecasts are also discernible in the views of Erin Murphy, a New York University law professor who specializes in technology and forensic evidence in the criminal justice system. “We’re hurtling into a world where genetic information is going to become incredibly useful and powerful for employers in regard to life insurance, health insurance and so forth,” she told me. “The bottom line is that it will be cross-applicable because it’s the genome.” More concretely, there is a concern that at some point, various bodies – whether governmental or private – will make decisions about our lives on the basis of genetic information we provided unthinkingly. Anne Marie Schubert, the Sacramento district attorney, says she has built a model for supervising the use of genetic genealogy, similar to the one used to oversee the FBI’s database. (To gain access to the latter, police officers must sign a statement declaring that the crime under investigation was violent and that all other possible avenues of investigation have been exhausted.) Murphy sees this as a step in the right direction, but adds that far more comprehensive legislation is required. “I think people fail to appreciate exactly what law enforcement is doing when they use those searches,” adds Murphy, “what’s called SNP testing [used by the commercial testers for recreational genealogy]. These are really the keys to a person’s identity and existence.” On this point, Paul Holes, the retired detective, notes that the police can only have access to matches between profiles, and do not get access to the complete genetic code itself. Murphy rejects assurances from Curtis Rogers and CeCe Moore concerning voluntary consent and changes in the terms of use of GEDmatch. She explains that the activities of people who use GEDmatch affects others who are not members of the service, and therefore the consent is invalid. “Why can someone I don’t even know exists give away my genetic information?” she asks, adding that there are legal precedents supporting this stance. “If you’re a joint occupant of a space – for example, I live in my home with my husband, and police show up to search the place. I tell them to go ahead and my husband says no. My go-ahead can’t override my husband’s no. I think we can think of the genome in the same way.” The question of whether terms of usage can guarantee protection of privacy hasn’t yet been decided in the United States, Murphy says, but notes that there are many difficulties in this approach. Nor, she adds, does it provide a solution to the problem of consent – moreover, GEDmatch can change its terms of use at any time, so that the argument is flimsy from the outset. Finally, Murphy explains that there is very little supervision in the field of genetics in the United States, and says that she supports the idea of a comprehensive regulatory structure in regard to genetic information. Given that political battles will probably prevent agreement on such legislation, she says that “the likeliest outcome is that this Wild West situation will continue. We will also see more of those cases [of crimes being solved by means of genetic genealogy], because one of the major impediments now is cost and technological limitation,” barriers that are constantly dropping. And because it’s unlikely that people will drop their leisure-time interest in genetics, she adds, they must at least think more seriously about how the law enforcement system uses genetic information. Moore has a different take. “Most family members said you can never find closure. But they want justice. They want answers – and I can give them that,” she asserts, and goes on: “Maybe some of the people who commit these crimes will realize that it will be a lot harder to get away with them in the future. Maybe it will save one life, maybe it will save hundreds of lives. It’s worth it.” https://www.haaretz.com/us-news/.premium.MAGAZINE-to-solve-cold-cases-all-it-takes-is-dna-a-genealogy-site-and-high-speed-internet-1.6657176

Tonight at 10 PM ET Dr Henry Niman PhD Personal DNA Information Could Soon Be Abused

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