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TR: Are you recruiting participants for the pilot project? Who will be the pioneers?
GC: It took a year for us to get permission for the project from our institutional review board. The recruiting process will go in stages. The board asked that I start with myself because I am well-informed and could stop the project if I saw a problem. We will expand to two more people in March; and once we've worked out a mechanism to show that the benefits outweigh risks for the first three people, we can recruit more people. We have 140 people who would like to participate. The total number of participants [at this phase] will be limited by funds and by the review board's assessment of how it went. We are trying to get funds for a large number of people.
The initial participants will probably be tenured human geneticists, because they know the risks and other issues. Eventually, we want a broad, diverse set of people from different social and economic groups, and both healthy and unhealthy people. But they will need to be specifically up to speed on how genetics works. This could be something very big once people tune into it. Not many know people know about it so far.
TR: How many people do you want to include in the project in the long run?
GC: If we're talking about a broad consortium of researchers and volunteers, there is no upper limit. If you could educate a billion people to the point where they could give informed consent, the statistics would be better. But it would be a huge educational task to get to that point. There's a need for broader education in genetics. It's almost up there with the three Rs in terms of its fundamental impact for the future. People are sophisticated in personal electronics. Hopefully, there will be a similar motivation for understanding yourself as well as you understand your car.
Guest (Steve)
If it is part of your medical record, any cop any time can just waltz in and ask for a copy.
This needs to be personally controllable.
There needs to be severe punishments for researcher that lose control of the data.
Guest (Aaron Brill)
Very important. Good approach. Good luck. Vanderbilt is launching a DNA database project with anonymyzation and linking to medical records within the institution. It will be interesting to see how different approaches merge.
Guest (Owen N. Martinez-Sandin)
Possible volunteers: Me and who else?
I am fully health-insured through Medicare and Humana. Being comparatively healthy, although 77, there are no difficulties in having my genome become public, if it con contribute to humanity.
There may be a large number of others, similarly available. Let us know how we can help. Sincerely, Owen
Re: Possible volunteers: Me and who else?
My only change is that I am enrolled in Blue Cross / Blue Shield. I was treated for prostate cancer in 1995 and have seen no sign of its return. I have made my phone number available nationwide through medical patient publications as a reference for patients diagnosed with prostate cancer as a patient advocate. I can be reached at 703-280-5765 and would look forward to being selected to participate in the personal genome project as a volunteer. Howard Bubel
Guest (Pete)
Dr. Church's recent paper (Science. 2005 309:1728-32)is a technical coup de grace. But a personal human genome sequence based solely on this technology will most likely not be sufficiently accurate. In light of recent studies showing very high frequencies of copy number length polymorphisms (see Jan. '06 Nat Genet.) that will confound the sequencing and fundamental genome assembly and annotation errors (Cytogenet Genome Res. 2006;112:1-5), any attempt to directly relate the sequence(s) from an individual to their pathogenicity would be medically irresponsible. A combination of technologies will be needed.
Guest (George Gallman )
I have a number of health related problems that make it difficult for me to find reasonably priced insurance. One problem is height. I much too short for my weight. It seems if a person is already on the short end of the insurance program it may well be of an advantage to find some positive markers that may indicate that they are a better risk than current screening tools. Furthermore, some indicators may allow early treatment of problems that could increase life expectancy and decrease cost of treatment if such treatment were delayed, thereby increasing insure-ability.
I am willing to be one early ones.
Http://www.ggallman.com
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Guest (Chris Miller)
Insurance discrimination
Why is insurance discrimination such a big deal? If I sell insurance, I want to identify the good risks and avoid the poor ones (or offer them an increased rate to cover the increased risk). At present, health or life insurers ask prospects about the health of their parents - this is a (crude) form of genetic 'discrimination'. If genetic information is available to the insured but not the insurer, there's a danger that all the poor risks will rush to take out life or health insurance and companies will be forced to increase their rates accordingly.
Reply
Guest (Steve)
RE:Insurance Discrimmination
So, if I tell the agent that I
am adopted, I may get a better
rate than if I own up to having
cancerous parents?
Can I just disown and disavow any
knowledge of my parents for the
discount?
Reply
Guest (Chris Miller)
RE: Insurance discrimination
You can fib as much as you wish - but the insurer may decide not to pay a claim if they can prove that you were fibbing!
Reply
Sandman157
1 Comment
Re: RE: Insurance discrimination
I don't think you guys get it - the insurance company isn't going to ask you any questions, except maybe "Roght or left arm?" as they sample your blood. It doesn't matter how many fibs you tell - if you have the gene, then you have it. Now, what actions they can take on the basis of this knowledge - that's what the debate is about. But the point that defeective persons will quickly take out insurance is well made. Women who had themselves tested for breast cancer risk genes and got a positive result (i.e. - they had the cancer gene) were very likely to go quickly and take out large life insurance policies - from companies who were not informed of the recent test results. It may sound like a little guy getting the jump on a big corporation, but it will bring down the whole apple cart if it's allowed to continue.
Sandman
Reply
Guest (Pete)
Personal Genome Project
Dr. Church's recent paper (Science. 2005 309:1728-32)is a technical coup de grace. But a personal human genome sequence based solely on this technology will most likely not be sufficiently accurate. In light of recent studies showing very high frequencies of copy number length polymorphisms (see Jan. '06 Nat Genet.) that will confound the sequencing and fundamental genome assembly and annotation errors (Cytogenet Genome Res. 2006;112:1-5), any attempt to directly relate the sequence(s) from an individual to their pathogenicity would be medically irresponsible. A combination of technologies will be needed.
Reply