A report from the NBC affiliate in Boston sheds light on an aspect of mail-in DNA kits that may surprise some users: when you sign the paperwork to obtain the results, you're often granting a "perpetual, royalty-free, world-wide, transferable license" for the data. The company in this example is Ancestry, but in an interview Glenn Cohen of Harvard Law School's Petrie-Flom Center noted "that kind of language is probably buried into the informed consent or the forms you sign almost every time you've donated blood or had a blood test." In a statement, Ancestry said they will "not share DNA data with third party marketers, employers or insurance companies," and they allow users to delete their DNA results and/or ask the company destroy the sample from which the results were derived. They also store your DNA without your name. However, these policies are not included in the contract users of Ancestry DNA are required to sign. Consumer protection attorney Joel Winston is quoted in Slate saying “Even if you’ve never used Ancestry.com, but one of your genetic relatives has, the company may already own identifiable portions of your DNA.” Issues related to shared family genomics and privacy have been explored by Consortium Chair Susan M. Wolf and her co-investigators, resulting in a major symposium on the subject.
The latest revision to the Common Rule released in January exempted studies using "benign behavioral interventions" – such as those typically used by social scientists – from the level of oversight required for medical research with human participants. This news was welcomed by some who have long chafed against what they see as excessive scrutiny of their studies. In an article about the changes, the New York Times reports about an op ed published in the Chronicle of Higher Education; in it, co-authors Richard A. Shweder, an anthropologist, and Richard E. Nisbett, a psychologist, celebrate the easing of oversight, noting "Socrates himself would probably roll over in his grave if he knew about the hoops his academic heirs in the humanities, law, and the social sciences have been jumping through." However, famous studies like the Milgram and Stanford prison experiments demonstrate the extremes to which social science research can go. Tracy Arwood, assistant vice president for research compliance at Clemson University, notes: "Researchers tend to underestimate the risk of activities that they are very comfortable with," particularly when conducting experiments and publishing the results is critical to the advancement of their careers. Read the entire New York Times article here.
More than 60 Minnesota children, mostly from the state's large Somali-American community, are infected with measles. The outbreak is a direct result of efforts by anti-vaccine activists such as Andrew Wakefield, the discredited researcher behind the film Vaxxed, who has visited Minneapolis and met with Somali parents. According to the Minneapolis Star Tribune, the rate of measles immunization among Somali-American children has plummeted from rates as high as 92% in 2004 to just 42% today. Alarms were sounded in 2008, when it was reported that a disproportionate number of Somali-American children were participating in a preschool program for those diagnosed with autism. Some members of the Somali-American community have been alarmed by claims that autism can result from the measles-mumps-rubella (MMR) vaccine, concerns shared by a significant portion of the general public despite efforts by public health workers to combat that perception. An article in Snopes details how one discredited anti-vaccine study was recently published, then unpublished, by two academic journals, digging into the "suspect statistics and devil-may-care attitude toward methodological design" in the paper. Meanwhile, Ilhan Omar, the first Somali-American legislator in the US, is working with the Minnesota Department of Health to encourage vaccination and rebut myths about autism, an effort that is showing results.
Gestational surrogacy has been available in the US since at least 1976, and over the past 40 years an increasing number of people have sought women willing to carry a baby to term for them. According to an article in The Economist, "Though the number of children born globally each year through surrogacy is unknown, at least 2,200 were born in America in 2014, more than twice as many as in 2007" – despite calls by feminists and religious leaders to regulate or ban the practice outright because they consider it exploitative. Among the reasons is the lack of clear regulations across state and national lines, which allows those who want to hire a surrogate to move their search to different countries when they confront obstacles; the article notes, "rather than ending the trade, tighter rules are simply moving it elsewhere." Read the entire piece here.
A new paper just published in PLOS ONE examines the motivations and characteristics of people who openly share the results of direct-to-consumer genetic testing using the web platform OpenSNP. The team of authors, who are affiliated with the University of Zurich, University of Cambridge, and Goethe University in Frankfurt, found those who shared their data were motivated by a desire to learn more about themselves; to advance medical research and improve genetic testing; and because they considered it fun. The researchers noted "Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible." Among the paper's authors was Effy Vayena, who spoke at the Consortium's recent conference on research ethics. You can see her talk here.
An article in the Washington Post co-authored by University of Minnesota health policy professor Sarah Gollust analyzes the bill that passed the US House of Representatives last week. Gollust and her co-researchers conducted a national survey in March asking 1,588 Americans what they knew about the Affordable Care Act (ACA, also known as Obamacare) and the proposed American Health Care Act (AHCA, also known as Trumpcare), whether their views of these programs were favorable or unfavorable, and how completely they understood each. The results? Among those surveyed, even those who were aware of the ACA requirement to purchase insurance or pay a penalty prefer the ACA to the AHCA. Of particular concern regarding the AHCA was its penalty for enrollment gaps, fines that would be paid to insurers. The authors conclude the enrollment gap could be used as an additional line of attack by anti-AHCA activists, noting "the public is already concerned about protections for people with preexisting conditions, huge cuts to the Medicaid program, and citizens losing insurance. Highlighting the AHCA’s coverage-gap penalty could drop public support further."
Over the past 20 years, a preserve known as Pleistocene Park has been created in Siberia with the goal of restoring grasslands once home to megafauna like mammoths. The theory behind the park, as described in The Atlantic, is that restoring the wildlife inhabiting it more than 12,000 years ago will create an ecosystem that will slow the thawing of Arctic permafrost, which has more carbon locked in it "than there is in all the planet’s forests and the rest of the atmosphere combined." Two scientists, a father and son named Sergey Zimov and Nikita Zimov, have dedicated their lives to clearing the forests that now cover the Mammoth Steppe by reintroducing species such as musk oxen, wild horses and other large herbivores. However, they need mammoths, "a keystone species on account of their prodigious grazing, their well-digging, and the singular joy they seemed to derive from knocking down trees." The project has inspired geneticist George Church to accelerate his research, which uses the CRISPR genome-editing technology to attempt the creation of a close relative of the mammoth. The article notes, "Nikita and Sergey seemed entirely unbothered by ethical considerations regarding mammoth cloning or geoengineering. They saw no contradiction between their veneration of 'the wild' and their willingness to intervene, radically, in nature." According to Nikita Zimov, “Playing God doesn’t bother me in the least. We are already doing it. Why not do it better?” Read the entire article here.
A DNA analysis of 14 horse skeletons preserved in Russian and Kazakh sites reveals the Scythians, who ruled the area more than 2,000 years ago, were sophisticated breeders. Fierce, nomadic warriors, the Scythians are believed to be among the first to ride horses into battle, helping extend their territory over large parts of Eastern Europe and Central Asia. The remains of the horses who were studied were preserved in permafrost, allowing an international team of researchers to perform the whole genome sequencing revealing that "the Scythians bred for certain characteristics: stockier forelimbs that were thicker and shorter. The horses also had genes for retaining water, perhaps indicating that the mares were milked for human consumption." The New York Times article notes, "The findings also fit an emerging theory of how domestication in general changes animals as they become intertwined with humans."
Marches highlighting the importance of science – both its methods and its goals – attracted massive crowds on April 22. The organizers called for the science march after the successful Women's March drew millions on January 21; the protest was a response to ominous signs from the Trump administration regarding its intention to suppress government activities related to climate change, cut research funding, and slash the budgets of federal agencies with a scientific mission. According to the New York Times, the flagship march in Washington drew large crowds (estimated at 40,000), with similar results being reported from across the nation. In St. Paul, a protest at the Capitol drew more than 10,000, and was one of 13 pro-science rallies held in Minnesota. According to the Star Tribune, "Notable events [were held] in London, Paris and Sydney. . . . Chicago, New York and Los Angeles were among the largest U.S. marches, and smaller events took place across the country."
Videos are now available for sessions held during the two research ethics conferences presented at the University of Minnesota on March 8 and 9, 2017. At these events, researchers, policymakers, bioethicists, patient advocates and other stakeholders explored best practices for research with human participants. The conferences are The Future of Informed Consent: A Century of Law, Ethics & Innovation (March 8) and The Challenges of Informed Consent in Research with Children, Adolescents & Adults (March 9). The videos are posted at z.umn.edu/researchethicsvideos for free public access.