Led by the National Institutes of Health (NIH), the “All of Us” research program is hoping to enroll over one million Americans for a comprehensive longitudinal study. It’s currently in beta testing and in September, the group announced that it now has 2,500 volunteers signed up.
By Juliet Preston | MedCityNews
NOVEMBER 2017 – For those that did mull over the pros and cons of the study with a genetic counselor, there were three main reasons for declining: Not wanting to learn of unfavorable or uncertain findings (38 percent), concerns about insurance discrimination (26 percent) and concerns about privacy (22 percent). Kozubek believes parents may have also lost faith that such studies are fueled by good intentions. He writes: I suggest the low enrollment underscores how a public fascination with genetics — half of parents on a previous survey said they were “very” interested in the project — is coupled with distrust in the commercialization of biotech, which is creating new social and economic inequalities. But there’s a contrasting story, taking place in San Diego, California. On a need-to-know basis Under the leadership of Stephen Kingsmore at Rady Children’s Institute for Genomic Medicine, a similar program called RadySeq has reported consent rates of 88 percent. Kingsmore said in an email that he is familiar with BabySeq. Both are NIH-funded studies examining whether newborns today can benefit from genome sequencing. They share notes biweekly. However, he also highlighted some important distinctions.
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