Recorded: 31 May 2003
I’ve spent more of my time that I ever thought I would on the concerns about ethical, legal and social implications. I would guess a good third or maybe even a half of my time seems to be devoted to those issues. And I think that’s appropriate now that I’m immersed in it because if we don’t get that part right then all of this wonderful science may basically come to naught. The genome project could be a stillbirth if we don’t figure out how to make the public aware of the opportunities and the pitfalls and to put some safeguards in place as we need to.
One of the things I’m feeling very good about today is that ten days ago after seven years and countless hearings and visits with members of Congress and discussion with advocates and even efforts on my part, a simple scientist, to try to figure out legislative language, the Senate committee on Health Education and Pensions decided to pass, unanimously, both parties, an effective bill on genetic discrimination outlawing the use of that information in health insurance and in the work place. That took so much, so much effort to get to this point. But it’s so critical because it’s already the major reason why people are afraid of genetics. So I’m feeling today optimistic that that committee vote will lead to a senate vote which will then lead to some house action and a presidential signature and perhaps the most major stumbling block, to a future that I hope for, will be erased. That people will be able to say its okay for me to find out this stuff about my DNA and not fear that it’s going to get used against me. And everybody ought to have that confidence and right now they don’t... So that’s one example but there’s many others?
Jan Witkowski: But does that bill include family history?
Francis Collins: Yes.
Jan Witkowski: So__________
Francis Collins: Yes. Yes. Yes.
Jan Witkowski: Not just DNA based.
Francis Collins: Not just DNA based, it includes family history explicitly and you have no idea how much blood was spilled to be sure that was the case. And it survived. It survived challenges that looked like they were going to bring it down.
Francis Collins earned a B.S. in Chemistry from the University of Virginia (1970), a Ph.D. in Physical Chemistry from Yale University (1974), and an M.D. from the University of North Carolina (1977). While a researcher at the University of Michigan (1984-1993), he pioneered “positional cloning” methods which resulted in the Collins team and their collaborators isolating the genes responsible for cystic fibrosis, Huntington’s disease, neurofibromatosis, and others.
In 1993 he accepted leadership of the Human Genome Project (HGP) by becoming Director of the National Center for Human Genome Research (NHGRI). With Dr. Collins as head of the NHGRI, the HGP attained its goal of sequencing all 3 billion base pairs of the human genome.
He has attended all of the Cold Spring Harbor meetings on genomics.