The Consortium conducts original research, serves students and faculty, and advances public dialogue and understanding on emerging issues at the intersection of science and society.
The National Academies of Sciences, Engineering, and Medicine have released a new consensus report on returning individual research results, which offers a process-oriented approach that considers the value to the participant, the risks and feasibility of return, and the quality of the research laboratory. The committee that created the report was chaired by Jeffrey R. Botkin (University of Utah School of Medicine) and also included Wylie Burke (University of Washington), Vanessa Northington Gamble (George Washington University), Amy L. McGuire (Baylor College of Medicine) and Consuelo H. Wilkins (Vanderbilt University Medical Center and Meharry Medical College), all of whom are Consortium collaborators. Prof. Wilkins is on the planning committee and will be speaking at our forthcoming conference, Law, Genomic Medicine & Health Equity: How Can Law Support Genomics and Precision Medicine to Advance the Health of Underserved Populations? Learn more about the conference here.
According to an article in Scientific American, "Several DNA testing companies have volunteered their services to help reunite immigrant families separated at the southern U.S. border. But scientists and ethicists warn broad-based genetic tests are 'overkill' and do not make sense for making such matches." Consortium chair Susan M. Wolf is among them; she raises concerns about whether permission to undergo genetic testing in such circumstances is really given freely, one of the core requirements for obtaining informed consent — the article notes, "a parent faced with not getting their child back if they do not get a genetic test really has no option." Wolf goes on to point out problems with defining "family" solely by biological relationship: “What about the loving long-time caregiver who may not be genetically related to that child? Those families deserve reunification, too.” Despite such concerns, The Atlantic reports that the US Department of Health and Human Services announced last week that it will conduct DNA tests in an attempt to comply with a court order from the US District Court in San Diego. The court declared that all minors from separated families need to be reunited with their parents or guardians by July 26.
An article in the Minneapolis Star Tribune describes concerns over a program in which paramedics from Hennepin Healthcare administer the sedative ketamine when responding to reports of extremely aggressive or agitated people. The newspaper obtained a draft report that examined the protocol, which was apparently driven by a study "which began last August, requires no consent from patients whose data can be used for research, but gives the subject the option to opt out afterward." The report alleges that in some cases, police encouraged or directed use of the drug. Representatives of Hennepin Healthcare explain that ketamine and and other sedatives "can be a lifesaving tool when paramedics encounter people showing signs of 'excited delirium,' a condition when severe agitation can lead to death." However, "a recent paper published by the hospital [noted that] 57 percent of study patients given ketamine required intubation — inserting a tube in the throat to help deliver oxygen." According to Carl Elliott, who is on the faculty of the Center for Bioethics, a Consortium member, “If I were asked to consent to this study in advance, I would refuse. I would never want to be in this study. And yet they’re describing it to people like it’s so uncontroversial that they can enroll them without even asking them.”
An article published in Slate as part of their Future Tense project provides a valuable overview of the current state of privacy protections for those who use direct-to-consumer (DTC) genetic tests: "There’s a basic asymmetry at work in genetic testing: It takes just a few minutes to put some spit into a vial, sign a few disclosure forms, and pop your saliva in the mail. But that little bit of spit can yield volumes of deeply intimate data about your body. As Undark Magazine has reported in the past, that information can last for decades. It can be subpoenaed in court. It can be stolen. And it can be bundled and sold as a commodity. . . . Unlike genetic data collected in a hospital, the information that direct-to-consumer tests gather about you is not subject to the Health Insurance Portability and Accountability Act, or HIPAA, which places restrictions on how health care providers can share information about patients. State laws offer some regulations, but they vary widely from state to state." DTC genetic tests are among the topics being studied as part of the LawSeqSM project, for which Consortium chair Susan M. Wolf is one of the PIs; Barbara J. Evans (University of Houston Law Center), a member of the LawSeqSM working group, is quoted in the article. Learn more about the project here.