James P. Evans, a genetics professor at UNC-Chapel Hill, cautions against making too much of genetic information.
Even if Angrist or one of his fellow participants learns he has the gene for a horrible disease. that is far from a guarantee that the disease will ever occur, Evans said. Even in a larger group of donors, Evans said, it would be difficult to make solid medical decisions based on what DNA shows. A woman whose DNA suggests future breast cancer, for example, shouldn’t necessarily run out and get a mastectomy.
“The information one gets is virtually all probabilistic; it’s not actionable information, medically,” he said. “To me, the biggest danger is that its utility will be exaggerated because people put this mystical value on DNA.”
As usual, Dr. Evans is absolutely right.
I appreciate the reporter’s hard work and I like the story, but I would offer a few corrections/clarifications:
- “Americans are notoriously hung up on privacy, and I get that,” he said. “[But] I don’t think that information is toxic.” That is an accurate quote, but that doesn’t mean I think we should all walk around naked or read each other’s mail.
- “When you make everyone anonymous, you impoverish the data,” he said. “You may have that person’s DNA, but you don’t have a name or a lot of the details that you may want someday.” Again, accurate, but I shouldn’t have emphasized names. I should have said that re-contacting research participants is important and you can’t do that when you sever the link.
- Since then, two pioneers in the field, James Watson and J. Craig Venter, allowed their DNA to be totally decoded and made public. At the risk of nitpicking, Watson wanted his genotype at the Alzheimer’s risk gene APOE redacted. Alas, it couldn’t be done.
- In Angrist’s case, DNA was taken from a graft of his skin and mechanically sheared into smaller pieces; it will be put through a complicated, multistep process until the sequence is determined. Angrist’s DNA sample was taken in late October, and he hopes to have his genome sequence information within weeks. Actually, my genome sequence will be determined from white blood cells I donated in 2007. My skin cells will be used to create a cell line that is stem-cell-like.
- A native of Pittsburgh, he came to Duke in 2003 and works primarily in the areas of intellectual property and gene patenting. While it certainly feels that way at the moment, I’d like to think my work encompasses a lot of other stuff too: personal genomics, teaching, science writing, etc.
- [”Alzheimer’s is] in your 70s,” Angrist said. “Something that’s going to happen to me 30 years from now is not going to keep me up at night.” Of course I realize that many people develop AD much earlier. I did not mean for this to sound as blase and callous as it might. My point was, I have plenty of other stuff to worry about for the next couple of decades.