Watch: Charlie Sheen’s doctor wants you to know he’s no Hollywood quack Keren Landman HealthCould safer porn promote safer sex? About the Author Reprints Related: A proposal to require all porn actors in California to wear condoms on set is meant to protect the performers from sexually transmitted infections.But some public health experts are hoping it will protect the public as well — because when it comes to porn, a growing body of evidence suggests that in some cases, viewing leads to doing.In particular, researchers say the growing popularity of unprotected sex in gay porn may be playing an important role in the persistence of HIV and other sexually transmitted infections among gay and bisexual men. So they’re hoping the reverse might be true, too: Requiring actors to wear condoms on screen could encourage porn viewers to wear them in real life.advertisement @landmanspeaking It echoed a similar study, also funded by the NIH, that was published in 2013. It, too, described a dose-response relationship between watching and having unprotected anal sex among gay and bisexual men.The author of the 2013 study, epidemiologist Simon Rosser of the University of Minnesota, notes that watching porn in general — even watching a lot of it — doesn’t increase the risk of having unsafe sex. The correlation only holds with porn depicting unprotected anal sex.These studies don’t prove causation, but Nelson said she hears it from the men she talks to for her research: “They all say, ‘There’s no doubt this is impacting behavior in the community,’” she said.California workplace regulations already require employers to take measures to prevent the spread of disease, but the adult film industry has argued that the language is vague and doesn’t require its actors to wear condoms. The proposed update would make that requirement explicit. It would also compel adult film producers to cover costs of vaccinations, testing, and medical monitoring related to HIV and other sexually transmitted infections. Tags HIVsexSTI
A new approach to reducing HIV infections shows promise By Keren Landman Dec. 17, 2015 Reprints Eric Schrimshaw, a health psychologist at Columbia University’s Mailman School of Public Health, coauthored a study last year that found 34 percent of gay porn featured unprotected anal sex.And a separate study last year by Kimberly Nelson, a clinical psychologist at Brown University, found that gay and bisexual men were more likely to have unprotected anal sex if they had watched such risky behavior online in recent months. Not only that: Their risk increased in direct proportion to the amount of condomless porn they watched. That study was funded by the National Institutes of Health.advertisement Proposed regulations in California would require all porn actors to wear condoms while filming. Yasuyoshi Chiba/AFP/Getty Images Related: [email protected] The state regulatory board is expected to vote on the proposal in February. If approved, the rules will take effect in July 2016. Willful violations of the standards are punishable with a fine of up to $70,000.The Free Speech Coalition, the trade association for the adult entertainment industry, opposes the regulations. Industry representatives have argued that the regulations were designed for health care settings and are “unworkable” on film sets, and that they remove performers’ control over their own sexual health.“We focus on performer choice — it affects them more than the rest of us,” said Mike Stabile, a spokesman for the organization. Plus, he said, the recent availability of drug regimens that can help protect against HIV infections means that condoms are no longer the only way to safeguard performers.But Schrimshaw, the researcher at Columbia, said condom use is still critical for preventing sexually transmitted disease. He said the regulations are a step in the right direction — though he noted that they won’t affect porn filmed outside California.Nica Noelle already requires all her actors to use condoms for the porn she directs at the Icon Male studio in New Hampshire. But she’s not happy about an industry-wide policy — especially if it’s being sold as measure to improve public health.“Now the adult industry is responsible for the sexuality of society at large? No,” she said. “That’s not fair, and that’s not right.”
Month: June 2021
Rapid autopsies could speed cancer research. They’re also fraught for families
Dr. Jody Hooper, Johns Hopkins University In the LabRapid autopsies could speed cancer research. They’re also fraught for families But the procedures are forcing doctors and patients to overcome their reluctance to discuss death, and family members to confront the idea of parting with loved ones’ bodies shortly after their death — within six hours, optimally. Hopkins doctors typically broach the subject with patients while they are introducing the prospect of hospice care. But it also helps to have doctors trained in having the conversation, said Dr. Dejan Juric, a research oncologist at Massachusetts General Hospital in Boston.“Autopsies are often talked about in negative terms, but if you ask to donate tissues that can help thousands of other people, almost everyone says yes,” he said.Around 2011, Juric began treating a woman in her early 60s with breast cancer. She died in 2012 after tumors overtook her liver, bones, and lymph nodes. But before she died, Juric spoke with her and her husband about sampling her tumors to better understand what had eluded them during her treatment.They consented, and a rapid autopsy later revealed how the mutant genes that drive certain cancers will, when initially thwarted by chemo or other therapies, mutate again into slightly different variants of themselves depending on where and when the distant cancer grew.Juric’s findings were published in the journal Nature early last year. He subsequently helped identify an experimental drug, buparlisib, that targeted both the mutant gene that drove the initial tumor and the genetic cousins that drove distant metastases. (Juric, who has consulted for Novartis, the maker of buparlisib, is also developing new treatments to target these mutant gene families more effectively than past drugs.) Dr. Dejan Juric is a research oncologist at Massachusetts General Hospital in Boston. Kayana Szymczak for STAT Related: Why are doctors so bad at telling patients they’re dying? Cindy Eid, whose sister died of breast cancer in 2014, recalled oncologists broaching the subject of a rapid autopsy with her in the days before her sister died.Susan was not conscious at the time.“I just instantly knew it was perfect for her,” Eid said, adding her sister would have wanted to help future patients. “Her philosophy was that if it’s experimental today, it could be a cure tomorrow. Or a treatment.”Backed by a donation from Eid’s estate, Juric and Dr. James R. Stone, a Mass General pathologist, Mass General created a formal rapid autopsy program this year. The hospital now performs roughly two to three procedures weekly, compared with one every three or four weeks in previous years, and is exploring ways to offer them to patients who die outside the hospital.The program will fuel one of the most significant trends in cancer research: the creation of what Juric calls patient avatars, the cell lines or mouse models derived from a patient’s tumor that can be used to test treatments for patients with similar histories.Just as aviation researchers have saved countless lives by piecing together clues from airline disasters and helping design safer planes, oncologists like Juric believe they can analyze cells derived from a deceased patient’s tumor and develop better treatments for others in the future.“We’d like to use these avatars to potentially design even entire trials, just using these patient-derived models,” he said. “We want to build platforms. Make cell lines. Mouse models. Have labs ready and hungry to analyze the tumors.”“We need patients and families to embrace this, though. It looks at times like everything is lost when that patient dies,” Juric added. “But so many are left behind who will need these discoveries.”Allen Lee, a 30-year-old software engineer in Somerville, Mass., who is being treated for Stage 4 lung cancer, said his doctor hasn’t broached the subject with him, but he would be willing to participate if asked — and if his family did not object. “In an already very emotionally stressful time, I wouldn’t want to put something even more distressing on them,” he said.As an engineer, he said, he understands the philosophy of gathering information “even if you’re not sure what to do with it. You don’t really know where the gold is, so it’s better to try to get as much dirt as possible.”“It’s other people doing this that helps me, and it’s me doing this that would help other people,” he said. “I just wish the answer could come in time to help me.” “There’s horrible poetry to the idea that your tumor lives longer than you do, but that’s what happens with this,” said Dr. Jody Hooper, a pathologist who runs the rapid autopsy program at Johns Hopkins Medicine. “Tissue has become the holy grail.”Hooper spoke by phone last week from a meeting of North American pathologists, where representatives from other major hospitals were seeking advice on how to set up similar programs. So far, roughly 10 hospitals conduct the procedures.Hooper is the only pathologist to perform rapid autopsies at Hopkins, and she’s been busy, performing at least seven in the past 10 weeks as more researchers and patients sign on.The logistics can be complicated.Doctors discuss the procedure with patients, but in most states, it’s the surviving family members who must consent to the procedure.Patients and family members can limit the scope of the autopsy however they wish, though Hooper said she “always makes some kind of incision. And I encourage families to consent to a full autopsy, because sometimes I can find tumor sites that don’t come up on imaging.”If the patient dies outside the hospital, Hopkins arranges transport for the body. Hooper is available for autopsies seven days a week between 5 a.m. and 11 p.m. Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. Please enter a valid email address.
By Bob Tedeschi March 22, 2016 Reprints Related: Privacy Policy Leave this field empty if you’re human: Autopsies are vital to medicine. Don’t let them go extinct If relatives agree, pathologists are given an opportunity to explore the body more widely for tumors and take more tissue to analyze than when a patient was alive. They can also keep the cancer cells alive in perpetuity in hopes of finding new ways to shut them down.advertisement Medical teams have long rushed to save the living. Now, increasingly, they’re rushing to attend to the dead.A small but fast-growing number of hospitals are embracing procedures known as “rapid autopsies” — conducted in the hours immediately after a patient’s death.The idea is to obtain tissues from tumors before they start significantly degrading. Using genetic analysis technology, doctors can then determine precisely how cancer cells survived every attempt to kill them.advertisement “There’s horrible poetry to the idea that your tumor lives longer than you do, but that’s what happens.” Tags autopsycancerJohns Hopkinsoncology
We should reward peer reviewers. But how?
Only the reviewers who make the top 80 percent in terms of promptness will make the ranking list; those in the bottom 20 percent won’t have to see their names on a roster of shame.Leaving aside whether the pilot — which is raising eyebrows among some scientists on social media — will be an effective incentive for scientists to serve as reviewers, it has another problem: Prioritizing speed in the review process is fine if the goal is throughput, but is it good for promoting quality science?The answer is hardly. Rapid reviews can be shoddy, as Elsevier knows well from a case in one of its own journals last year. And given how many problems readers are identifying on sites like PubPeer once papers are published, does pushing for speed really make sense? That leaves a final kind of incentive that some have experimented with: Money. “We need to abandon the belief that there is only one peer review market that operates entirely on volunteer labor,” Philip Davis, a publishing consultant, told The Times Higher Education earlier this year. The open-access journal Collabra is offering reviewers and editors modest payments based on the fees it charges authors. Scholars can take the cash, or, if they prefer, donate it to a fund Collabra has set up to help authors defray publication charges. Similarly, the small United Kingdom-based publisher Veruscript earlier this year announced plans to pay the reviewers for its four new journals. As with Collabra, the money will come from the article fees Veruscript charges authors.These ideas might only be possible for small upstarts to attempt. After all, a little napkin math quickly reveals how costly paid reviewing can be — and how seductive the free version is — for big publishers. Elsevier has some 3,200 journals in its catalog. Assuming each of those titles considers, on average, 100 manuscripts per year that require three reviewers per article, that’s just shy of a million reviews annually.If Elsevier were to pay, say, $100 per review (a laughably small sum for the effort, which researchers say takes a half day when done properly), that’s $100 million per year. (Though critics would point out that that amount is a tiny fraction of the company’s annual profits.) The company could offer payments to individual reviewers, or even pool the funds to support research projects by its authors — something we imagine researchers could get behind.So, it’s time for the big fish to get into the pond. Then they could write up their findings and submit the manuscript to a peer-reviewed journal — and more reviewers would get paid. Please enter a valid email address. By Ivan Oransky and Adam Marcus Aug. 26, 2016 Reprints Why our peer review system is a toothless watchdog And Elsevier, which publishes some 3,200 journals, is now piloting a way for reviewers to get props from their peers and editors. The plan, according to a note sent to reviewers, is to “publish on the journal’s website a list of reviewers with their full names and their relative ranking and percentile in how quickly they submitted their report (computed as days between the invitation to review and the submission of a referee report).”advertisement Hyacinth Empinado/STAT Related: Privacy Policy Peer review is a thankless task. Almost entirely uncompensated and usually anonymous, it’s considered a professional obligation, a good for science in general. So scientists go along, accepting assignments from editors and effectively killing any chance of binge-watching their favorite show on Netflix after the kids have gone to bed.The system is also a way for journals and publishers to use the crowd to do much of the work of editors. In other words, all off the benefits accrue in a single direction, unless you count the warm feeling reviewers might get from doing something you think you should be doing.Publishers argue that what goes around comes around: You take the time to conscientiously review your peer because one day your peer will do the same for you; it’s the Golden Rule. Problem is, there’s gold in that system, but it’s not the karmic kind. Publishers have used the free model as a way to bloat their roster of titles or the number of papers they publish, diluting the quality of academic papers while they grow their bottom lines.advertisement Some have tried ways to make the ledger a bit more even. For many years, for instance, the Journal of the American Medical Association and the New England Journal of Medicine have printed lists of reviewers as annual “thank yous.” In a trial, Nature recently began publishing reviewers’ names on published papers, as long as authors and reviewers gave permission. A company called Publons allows researchers to collect badges and public recognition for their work reviewing, and has received — wait for it — good reviews. The WatchdogsWe should reward peer reviewers. But how? Newsletters Sign up for Daily Recap A roundup of STAT’s top stories of the day. Want a favorable peer review? Buy one Leave this field empty if you’re human: Related: Tags academic publishingNew England Journal of Medicinepeer review
From FDA expert to biotech insider: The drug industry thrives on the revolving door
Leave this field empty if you’re human: “There haven’t been many quantitative studies on the revolving door at the FDA, so we didn’t really have a sense of the scope and scale of these transitions to industry before now,” said Pham-Kanter, assistant professor at Drexel University and a senior fellow at Leonard Davis Institute of Health Economics at the University of Pennsylvania.“This study gives us a good start on knowing the current baseline in a medical specialty that has historically had a lot of industry ties,” she said.Pham-Kanter also cautioned against assuming that the pattern of FDA staffers leaving the agency to work for industry is troubling.“If individuals who work in industry are more informed about the regulatory process because of these employment transitions, that’s not a bad thing,” she said. “On the other hand, if former FDA staffers, in their current roles in industry, try to influence their former colleagues at the FDA, we should be concerned.”FDA spokesman Jason Young noted that the revolving door dynamic is not unique to the agency.“The FDA has a strong set of rules in place to ensure that our employees are working in the public interest, not to advantage any company, organization, or individual,” Young said.After they leave the agency, Young said, they are subject to additional rules that protect confidentiality of information they worked on while in federal service, a cooling-off period for senior employees, and other post-employment restrictions.Prasad is not convinced there’s no conflict of interest.“I’m not paranoid. These are good people,” he said. “But like all people, we’re swayed.” Related: Please enter a valid email address. BusinessFrom FDA expert to biotech insider: The drug industry thrives on the revolving door Prasad launched the study after asking colleagues who study medical ethics whether anyone knew how often reviewers went from the FDA to industry.“Those of us who follow this field of FDA regulation know anecdotal stories of people who work for FDA and then immediately went to the drug industry,” said Prasad, “but nobody knew how often.”Prasad enlisted medical resident Dr. Jeffrey Bien, who serves as lead author. Prasad and Bien identified all the reviewers in the FDA hematology-oncology section who worked on applications between 2001 and 2010.Nearly half were still working at the FDA. But of the 26 who left the agency, 15, or nearly 58 percent, had gone to work in some capacity for biopharmaceutical companies. (Thirty percent of the reviewers who left the FDA could not be identified.)Genevieve Pham-Kanter, a well-known health economist who studies conflicts of interest in the regulatory field, praised the report. “I think it’s astonishingly high,” said Dr. Vinay Prasad, senior author on the paper and assistant professor of medicine at Oregon Health and Science University. “When you are talking about cancer drugs, with high toxicity and sometimes small benefit, it’s a place where judgment really matters. “Prasad also wonders if reviewers might make more favorable calculations if they are looking ahead to more lucrative industry work in the future.advertisement By Sheila Kaplan Sept. 27, 2016 Reprints Privacy Policy
Tags cancerconflicts of interestFDApolicy Newsletters Sign up for D.C. Diagnosis An insider’s guide to the politics and policies of health care. FDA issues new draft guidelines for ‘appearance’ of conflicts of interest Chip Somodevilla/Getty Images WASHINGTON — Critics of the revolving door between government and industry cite the hundreds of lawmakers-turned-lobbyists as case studies in the art of cashing in on one’s years of public service.But less is known about the revolving door between the Food and Drug Administration and the biopharmaceutical industry.In a study published Tuesday in the journal BMJ, researchers who studied the careers of FDA medical reviewers found that more than half of the hematology-oncology assessors who reviewed drugs between 2001 and 2010 went on to work for the biopharmaceutical industry.advertisement “If you know a major post-employment opportunity is on the other side of the table, you give them the benefit of the doubt,” Prasad said. “You, maybe, make things a little easier on the companies.”
Pharmalot, Pharmalittle: Pinworm treatment costs 200 times more in the US than the UK
@Pharmalot Pharmalot Alex Hogan/STAT Pharmalot, Pharmalittle: Pinworm treatment costs 200 times more in the US than the UK Good morning, everyone, and welcome to another working week. We hope the weekend respite was relaxing and invigorating, because that familiar routine of deadlines, meetings, and whatnot has returned. Although the pending holidays suggest this will be a slow week, our experience suggests otherwise. After all, the world is still spinning, yes? So time to brace yourselves with a cup or three of stimulation. Cinnamon Dolce is our choice today. Meanwhile, here are your tidbits. Lots of news about pricing, by the way. Have a smashing day and do keep in touch …Impax Laboratories earlier this year began selling a drug for treating pinworm at an average wholesale price of $442 per pill, which means the usual two-pill treatment costs $884, the Financial Times reports. The drug was available as a cheaper generic version priced at around $1.60 per pill until 2011, when another company stopped production. Impax reintroduced a version of the pill, called Emverm, in April and is the only US provider. Meanwhile, it costs about $8.65 for a two-pack at the Boots pharmacy chain in the UK. Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. About the Author Reprints What is it? GET STARTED What’s included?
STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond. [email protected] Log In | Learn More Unlock this article — plus daily coverage and analysis of the pharma industry — by subscribing to STAT+. First 30 days free. GET STARTED Pharmalot Columnist, Senior Writer Ed covers the pharmaceutical industry. Tags drug pricingfinancepharmaceuticalsSTAT+ Ed Silverman By Ed Silverman Dec. 19, 2016 Reprints
A rare rat virus infects eight people in Wisconsin and Illinois
HealthA rare rat virus infects eight people in Wisconsin and Illinois Associated Press About the Author Reprints Eight people in Wisconsin and Illinois have been infected with a rare virus caught from rats Francois Mori/AP By Associated Press Jan. 20, 2017 Reprints MADISON, Wis. — Health officials are investigating how a rare rat virus called the Seoul virus infected eight people in Wisconsin and Illinois.The Wisconsin Department of Health Services says all eight people had direct contact with rats at Illinois and Wisconsin ratteries, which are rat-breeding facilities.Humans can become infected with the Seoul virus through direct contact with rats, though the virus cannot spread from person to person. Symptoms can include fever, chills, nausea, aches and pains or irritated skin. Not everyone experiences symptoms.Both people in Wisconsin recovered from the infections. Five of the six people in Illinois showed no symptoms.Wisconsin, Illinois and federal health officials are investigating the source of the virus. None of the ratteries involved are currently selling rats.— AP Staff Tags infectious diseasepublic healthvirology
Will new biotech products outpace the regulatory system?
[email protected] What’s included? Log In | Learn More GET STARTED STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond. Meghana Keshavan What is it? Will new biotech products outpace the regulatory system? A proliferation of new biotech products is on its way in the next decade — and it may overwhelm the regulatory system, according to a new report from the National Academies of Sciences, Engineering, and Medicine. This comes at a time when far-reaching deregulation looms, along with a government hiring freeze.The Trump administration, of course, has suggested that the Food and Drug Administration, among other government agencies, must cut two regulations for every one that they adopt. Dr. Scott Gottlieb, his nominee to head the FDA, may have his own ideas on the subject. About the Author Reprints
By Meghana Keshavan March 13, 2017 Reprints Unlock this article — plus daily coverage and analysis of the biotech sector — by subscribing to STAT+. First 30 days free. GET STARTED David L Ryan/The Boston Globe Biotech Biotech Correspondent Meghana covers biotech and contributes to The Readout newsletter. Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. @megkesh Tags biotechnologyCRISPRgeneticspolicySTAT+
Who’s going to win biopharma’s race to make a mint on migraines?
GET STARTED Who’s going to win biopharma’s race to make a mint on migraines? APStock Damian Garde [email protected] STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond. Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. Unlock this article — plus daily coverage and analysis of the biotech sector — by subscribing to STAT+. First 30 days free. GET STARTED Preventing migraines is shaping up to be the drug industry’s next big gold rush, a multibillion-dollar opportunity with four contenders vying to claim its lion’s share. But just which company triumphs will depend on satisfying patients, winning over payers, and — maybe — lining the pockets of doctors.The key is a protein called CGRP, which plays a role in the dilation of the brain’s blood vessels. Block it and you can prevent the painful, debilitating headaches that plague roughly 40 million Americans, studies have shown. It’s by no means a cure, but doctors say shaving a few headache days off of a migraine sufferer’s monthly burden can make a world of difference. By Damian Garde April 25, 2017 Reprints
National Biotech Reporter Damian covers biotech, is a co-writer of The Readout newsletter, and a co-host of “The Readout LOUD” podcast. Biotech About the Author Reprints What is it? What’s included? Log In | Learn More @damiangarde Tags drug developmentinsuranceSTAT+
Some state Medicaid programs continue to restrict access to hepatitis C drugs
STAT+ is STAT’s premium subscription service for in-depth biotech, pharma, policy, and life science coverage and analysis. Our award-winning team covers news on Wall Street, policy developments in Washington, early science breakthroughs and clinical trial results, and health care disruption in Silicon Valley and beyond. Some state Medicaid programs continue to restrict access to hepatitis C drugs GET STARTED @Pharmalot Tags drug pricingMedicaidpharmaceuticalsSTAT+ Unlock this article — plus daily coverage and analysis of the pharma industry — by subscribing to STAT+. First 30 days free. GET STARTED What’s included? Pharmalot APStock Ed Silverman
Daily reporting and analysis The most comprehensive industry coverage from a powerhouse team of reporters Subscriber-only newsletters Daily newsletters to brief you on the most important industry news of the day STAT+ Conversations Weekly opportunities to engage with our reporters and leading industry experts in live video conversations Exclusive industry events Premium access to subscriber-only networking events around the country The best reporters in the industry The most trusted and well-connected newsroom in the health care industry And much more Exclusive interviews with industry leaders, profiles, and premium tools, like our CRISPR Trackr. What is it? [email protected] About the Author Reprints Over the past three years, state Medicaid programs have done a much better job of disclosing information about access to expensive hepatitis C medicines and fewer are restricting treatment to patients, according to a new analysis.In 2014, 12 states did not make public their criteria for treatment, but all 50 states now do so (although one state, New Jersey, does not disclose specifics for treating different stages of the disease). And in the past three years, 17 states dropped restrictions to access based on a patient’s stage of liver disease, which has been a key test for determining treatment. In 2014, all 50 states had restrictions. By Ed Silverman Oct. 23, 2017 Reprints Log In | Learn More Pharmalot Columnist, Senior Writer Ed covers the pharmaceutical industry.
With startup, George Church bets cryptocurrency will boost genome sequencing
Dom Smith/STAT National Biotech Reporter Damian covers biotech, is a co-writer of The Readout newsletter, and a co-host of “The Readout LOUD” podcast. The key motivation behind Nebula, Grishin said, is that very few people have had their genome sequenced, partly because of cost but also because of concerns about privacy and genetic discrimination. Church has long argued that the more genome sequences that researchers can access, the better and more information they can glean about the relationships between DNA and disease as well as treatments for diseases. Another barrier to wider adoption is that today’s personal genomics companies, notably 23andMe, acquire the DNA data of paying customers and then sell it, in aggregate, to companies that hope to use it for drug discovery.advertisement A genomics startup co-founded by genetics pioneer George Church of Harvard emerged from stealth mode on Wednesday, proclaiming that blockchain, the technology that underlies transactions of cryptocurrencies such as bitcoin, will help people understand their genome, find cures for (unspecified) diseases, and, unlike most existing genomics companies, guarantee that individuals will retain permanent ownership of their DNA data.Nebula Genomics will do all of this, and more, through the hottest technologies since fire: Blockchain will ensure private untraceable transactions between individuals selling their genomic data and companies buying it, and a cryptocurrency called Nebula tokens will make the whole thing go round.“It’s a new approach to challenges of genomics, including sequencing costs, genetic data protection, data management, and genomics big data,” Church said. “We have the initial $600,000 investment that we sought,” from an angel investor. By the end of the week, said co-founder Dennis Grishin, it expects to have raised an additional $1 million.advertisement STAT+: Related: Marrying crypto and blockchain with genomics is only one of the company’s curious features. Grishin is a graduate student in Church’s lab; the other co-founder, Kamal Obbad, is an entrepreneur who graduated from Harvard in 2016 and will serve as CEO. Its six advisors include current employees of Veritas, another genome company that Church co-founded; an alumnus of digital currency exchange Coinbase; but also musician D.A. Wallach, former artist-in-residence at Spotify and an investor in SpaceX, Doctor On Demand, Ripple, Emulate, and Spotify. BusinessWith startup, George Church bets cryptocurrency will boost genome sequencing [email protected] NewslettersSign up for The Readout Your daily guide to what’s happening in biotech. By Sharon Begley and Damian Garde Feb. 7, 2018 Reprints Damian Garde Privacy Policy @sxbegle Some clinics allow patients to pay in bitcoin — but find little demand Please enter a valid email address. About the Authors Reprints Exclusive analysis of biopharma, health policy, and the life sciences. [email protected] Nebula, which explains its goals and strategy in a white paper, says it can do better on all counts. One slide in the white paper rates genetics companies including 23andMe, Ancestry, Veritas, and Genos on whether they provide private storage of genetic data, protect the data through blockchain or other form of secure computing, make data buyers such as drug companies subsidize an individual’s sequencing cost, and pay them for data. Almost all the companies have big fat X’s on each of these counts.Unsurprisingly, Nebula has welcoming green checkmarks everywhere. On paying individuals for their genome data, for instance, the company says that those who have their genome sequenced through Nebula or anyone else, whom it calls “data owners,” will be able to “join the Nebula blockchain-based, peer-to-peer network and directly connect with data buyers,” potentially profiting from their DNA.People who have their genome sequenced through Nebula, for a price starting at about $1,000, do not have to sell it to anyone, of course. The company also offers a sort-of DIY option so people “will be able to interpret their personal genomic data” with the Nebula app but “without sharing it with any third party,” the white paper said. Grishin said the company “will probably be directly and indirectly buying tokens from individuals to resell them to data buyers. Individuals might also use tokens to pay for third-party apps that interpret certain aspects of their genomic data.” As for Nebula, it of course will have the cash — or “fiat currency,” in cryptospeak — that companies paid for the tokens they need to buy individuals’ DNA data (though it might give out some tokens for free, Grishin said, to encourage people to join the Nebula network).It’s a tricky time to get into crypto. The four major cryptocurrencies have lost more than $500 billion in value since the start of the year, with bitcoin and Ripple faring the worst. This week, Bank of America, JPMorgan Chase, and Citigroup all enacted rules that prevent their credit cards from being used to buy digital currency, as Capital One and Discover had already done. While it remains to be seen how attractive this will be to individuals and companies, even less clear is the flow of money into and through Nebula. Payment to individuals for their sequence data will be in Nebula tokens, its cryptocurrency, which will presumably be launched in an initial coin offering by which the company will reap actual, real-world money. “We are not announcing any token sale at the moment,” said Grishin. “A token is necessary for the functionality of our protocol, but we have not decided yet how they will be distributed.”But a Nebula token is not a bitcoin, which can be used to buy airfare, furniture, and even baked goods. According to Nebula’s white paper, a token is redeemable only for its genomic sequencing, which the company will do in partnership with Veritas Genetics, which Church also co-founded. It’s therefore not clear how valuable any tokens people get from, say, a drug company interested in their A’s, T’s, C’s, and G’s will be to them. People have no reason to be sequenced more than once. And as sequencing costs drop, Nebula tokens would be expected to drop in value. That suggests that every Nebula token after the first one — if, say, lots of companies want a peek at someone’s amazing DNA — might have little value to an individual.In theory, people could sell their Nebula tokens for cash to others who want to have their genomes sequenced, hoping to reap a profit by, say, flipping enough tokens to cover the initial purchase price. But again, that price might not hold up, since, as pharma companies buy tokens and exchange them for DNA data, the supply of for-sale Nebula tokens will likely increase, putting downward pressure on their price in whatever exchange they trade on. IBM Watson teams up with FDA to study blockchain for data Senior Writer, Science and Discovery (1956-2021) Sharon covered science and discovery. Leave this field empty if you’re human: For data storage, Nebula will privately store individuals’ genomic and medical data, or enable them to store their genome sequence on, say, Dropbox. But these “data owners” will control who can access it. Data buyers must reveal who they are, and all records of bought and sold data will be stored in the Nebula blockchain, a technology that records all transactions (for, most famously, bitcoin and other cryptocurrencies).Playing to Church’s vision of lots of genomic data fueling important medical discoveries, the Nebula variant interpreter will get better and better as it analyzes more and more people’s DNA data, Grishin said; a variant originally associated with, say, breast cancer might turn out to be benign in the presence of a second gene variant. High-quality variant calls are key to attracting participants, Nebula said in its white paper, “since a good variant interpreter will incentivize individuals who obtained their genomic data elsewhere to join the Nebula network,” triggering a virtuous cycle.Individuals who “join the Nebula network” can participate in surveys by “data buyers” — pharma or biotech companies developing DNA-based drugs, but also academics studying genetic variants and diseases or other traits. (Nebula will give academics free or reduced-price tokens.) The surveys will ask about medical conditions. If you have one of interest to the data buyer (the surveys have multiple layers to keep people from lying about having a condition that’s of great interest to companies), the buyer can offer to pay your genome sequencing costs. People will be able to “profit from selling access to their data.” Related: Sharon Begley @damiangarde Tags biotechnologygenetics