Genomics & genetics

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Porter KM , Kauffman TL , Koenig BA , Lewis KL , Rehm HL , Richards CS , Strande NT , Tabor HK , Wolf SM , Yang Y , Amendola LM , Azzariti DR , Berg JS , Bergstrom K , Biesecker LG , Biswas , Bowling KM , Chung WK , Clayton EW , Conlin LK , Cooper GM , Dulik MC , Garraway LA , Ghazani AA , Green RC , Hiatt SM , Jamal SM , Jarvik GP , Goddard KAB , Wilfond BS . Approaches to Carrier Testing and Results Disclosure in Translational Genomics Research: The Clinical Sequencing Exploratory Research (CSER) Consortium Experience. Molecular Genetics & Genomic Medicine 2018;0:1-12. PDF icon Download PDF (932.77 KB)

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Cathy Wurzer with speaker at Mayo conference Sept 2018

Mayo Genomic Medicine Conference Asks: Hype or Hope?

September 17, 2018

At a conference held last week at the Mayo Clinic, health care professionals discussed the promise and limits of genomic (also known as precision) medicine. According to the Star Tribune, while optimism is justified, Dr. Michael Joyner of Mayo cautioned that "'I like to tell people to drink the Kool-Aid in small doses.' He described a 'hype-filled biomedical narrative' that, he argues, has led people to believe that genetic medicine has accomplished more than it really has." Mayo is participating in the federal All of Us Research program, in which 100 health care organizations in the US are collecting genetic information for one million people. A free conference and national webcast being held in Nashville on Nov. 29 will take the discussion of genomic medicine a step further, focusing on legal and policy solutions to ensure precision medicine doesn't exacerbate health inequities. That event, "Law, Genomic Medicine & Heath Equity" is co-sponsored by the Meharry-Vanderbilt AllianceVanderbilt University Medical Center, the Consortium on Law & Values in Health, Environment & the Life Sciences and Minnesota Precision Medicine Collaborative. Learn more and register here

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Graphic of human brain with pills/drugs

Alzheimer's Research Uses Innovative Clinical Design, Precision Medicine Tools

September 5, 2018

Recent research has raised hopes that new drugs can help slow or reverse the symptoms of Alzheimer's disease. While promising breakthroughs abound in this arena, what distinguishes the development of one of these drugs, BAN2401, was the clinical trial's "adaptive design." That approach "ensured that when new subjects were recruited, they were more likely to be assigned to arms of the trial that showed the greatest promise," according to the Los Angeles Times. Advocates for adaptive design note it can make clinical trials more flexible, efficient and ethical because it makes effective treatments more readily available to patients. Critics are concerned that such adaptation opens the door to biased studies. To read a recent symposium on challenges to the conduct of high-quality laboratory research, click here. The other promising drug, Anavex 2-73, was developed using precision medicine approaches. "Researchers [focused on studying a small group of] Alzheimer’s patients who bear a few 'actionable genetic variants.'" These variants were identified by genomic sequencing intended to find participants most likely to have a positive response to the drugs. On Nov. 29, the Consortium is co-sponsoring a free, public conference and webcast, "Law, Genomic Medicine & Health Equity" that will discuss some of the implications of precision medicine for traditionally underserved populations; co-sponsors are the Meharry-Vanderbilt Alliance, Vanderbilt Health, and the Minnesota Precision Medicine Collaborative. The event will be held at Meharry Medical College in Nashville, TN; to learn more and register, click here

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Family being separated at border

DNA Testing Being Used to Reunite Families Separated at Border

July 9, 2018

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. 

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Why is DTC Genetic Testing Booming Despite a Lack of Privacy Protections?

June 21, 2018

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.

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DNA spiral with globe in background

2018 Precision Medicine Conference Will Address Pharmacogenomics

May 31, 2018

On June 22, 2018, the Institute of Personalized Medicine will present its annual conference on precision medicine, "Pharmacogenomics: Genomic Testing to Individualize Drug Therapy." Pharmacogenomics (PGx) is the science of how an individual's genetic background impacts response to medications. This event will provide education on a range of topics including cancer somatic mutations and selection of targeted therapies, emerging PGx areas such as analgesics and how to apply PGx in minority populations, clinical PGx guidelines, use of PGx in children, implementation of PGx in practice settings, insurance reimbursement, evidence for cost effectiveness and improved quality of care. Sessions begin at 8 am at McNamara Alumni Center; to learn more and register, click here

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Wolf SM , Scholtes E , Koenig BA , Petersen GM , Berry SA , Beskow LM , Daly MB , Fernandez CV , Green RC , LeRoy BS , Lindor NM , O'Rourke PP , Radecki Breitkopf C , Rothstein MA , Van Ness B , Wilfond BS . Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants. Journal of Law, Medicine & Ethics 2018;46(1):87-109. PDF icon Download PDF (888.84 KB)

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