Whole Genome Scans Could Reveal Too Much

Whole Genome Scans Could Reveal Too Much
June 07, 2013


Hank Greely, Professor of Law, Director of the Center for Law and the Biosciences, Stanford University

Susan Wolf, Professor of Law and Medicine, University of Minnesota

Kelly Ormond, Certified Genetic Counselor, Director of the Genetic Counseling training program, Stanford University

Pam Widick, Nurse, Patient, Mayo Clinic Center for Individualized Medicine

What if you didn’t ask for it, you don’t want to know? Is the doc obligated to tell you anyhow?

a recent paper from the American College of Medical Genetics, which gives guidelines on how to deal with incidental things doctors might find

is there anything that we think sort of supersedes patient preference in the sense that we really think these are conditions where we’re sure enough about the genetic prediction, we think they’re serious conditions, it’s identifiable in you, and if you know about it in advance, you can do something to change the course, you can become healthier either because you’re getting screened or you’re doing something differently.

And so the committee decided that for a very small handful of conditions there were things that met that criteria and we felt should actively be disclosed.

as an example, there are 15 hereditary cancer conditions and 30 cardiovascular conditions and then two that have to do with taking anesthesia and having a very bad response.

We very clearly did not put conditions like Alzheimer’s disease or psychiatric illness or Huntington’s disease

medical care, testing, the information given back to patients, is governed by patients’ preferences. People don’t give up their rights when they go to see the doctor.
They get to decide what tests are done. They get to decide what information is given back to them.

expanding repeat diseases: Huntington’s disease

What does the sequence mean?
… different from the average human, but I can’t tell if it’s different in an important way.



More People Seek Genetic Testing, But There Aren’t Enough Counselors
April 18, 2016