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Adam Nash was conceived using in vitro fertilization so doctors could collect stem cells from his umbilical cord blood to save his sister Molly's life. Molly suffers from Fanconi anemia; according to her mother, Lisa Nash, who was quoted in the Minneapolis Star Tribune, "Molly was dying. She was in bone-marrow failure and she had pre-leukemia. We basically used Adam’s garbage to save Molly’s life," because cord blood is discarded after birth.
In a newly-released TEDMED talk, Sharon Terry of Genetic Alliance describes her journey to becoming a citizen scientist after her two children were diagnosed with the genetic condition pseudoxanthoma elasticum (PXE), which causes the symptoms of premature aging. She quickly learned “that there was no systematic effort to understand PXE . . .
New observational technologies are greatly complicating oceanographic research, even as they present tantalizing opportunities. Because they are less expensive and more networked than ship-based measurements, remotely operated vehicles like undersea drones and satellites can provide an unprecedented amount of data while democratizing the research process. However, these new tools also challenge existing maritime codes such as the United Nations Convention on the Law of the Sea.
Earlier this week, the 4th annual conference of the National Human Genome Research Institute (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was held in Farmington, CT. This year's focus was the many ways genomics is rapidly becoming a fixture in our lives, from prenatal genetic screening to the genetic testing of women with family histories of breast cancer. Physicians, geneticists, genetic counselors, social scientists and lawyers from academia, government and industry brought new insight and perspectives to debates over new and emerging data.
A new article in the American Journal of Law & Medicine by Consortium collaborator Barbara J.
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 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.
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.
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.
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.