Some genomic pioneers are sharing their entire sequences on the Internet. Yet what our genomes reveal might return to haunt us later, and more to the point, our families. Some of us won’t want everyone knowing our risk of cancer or Alzheimer’s disease, or worse, guessing our kids’ health risks. Yet we’d like researchers to be able to study the data without harm coming to us. And we need them to have access to the genomes of others. We would like to be able to check our individual risk of cancer or Alzheimer’s disease when we choose, or trace our genetic lineages using genomic tools. Unless many, many people share data revealing their risk of cancer or Alzheimer’s disease, and opt into ancestry databases, there will be no way to interpret ours.
For this system to work, we need to be in control of the information that results from having a personal genome sequenced. So this right should not go exclusively to the company that does the sequencing, or the website that identifies how one genome differs from another, or the academic researchers who do the research. The company or university that does the sequencing provides a service, but it should not own or control the data about us. Genome sequencing can provide high-impact medical results, but most of the time, it will merely illuminate our genealogy and satisfy our curiosity, and give moderately interesting insights into disease risk. In the continuum of potential results, FDA has a clear role in the medical aspects, but at the other end of the continuum does not have any business blocking us from using a website to find folks we’re related to. Teasing apart what needs to be regulated from what does not is a work in progress, and frankly, we’re optimistic it can happen.
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