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Friday, January 20, 2006

The Personal Genome Project

Continued from page 1

By Emily Singer
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TR: You have also said that you hope the PGP will spur development of software to enable personalized medicine, the idea that doctors can treat people based on their individual genomes. Why is this kind of software important?

GC: Let's say I gave you your genome tomorrow. Would you know what to do with it? Probably not, even if you're a physician. Someone is going to have to help physicians decide what kinds of diagnostics might be desirable, what kinds of nutritional interventions might be useful, or what kind of invasive procedures might be delayed.

You need software to do that. Hopefully, the PGP will help form a consortium of software developers to develop and test this kind of software on the PGP database and get it ready for general public use.

TR: What are some of the risks associated with having an individual's genome freely available?

GC: At the top of the list is the risk of insurance and employment discrimination [based on genetics]. Those risks are addressable by appropriate corporate or government regulations, such as mechanisms of insuring health care whether or not you have a genetic predisposition to a disease. We will start the project with people who are at low risk of this kind of discrimination, and people who know what they're getting into. It's like debugging a complex system.

Close behind is the risk of social stigma, which change from year to year. When we were younger, people would not talk about taking cancer drugs or antidepressants, but now it's common to share that kind of information.

TR: Do you think the benefits outweigh the risks?

GC: I think the benefits of the project outweigh the risks. But each individual will have to decide if the benefits outweigh the risks for them. People need to have thought out different scenarios and be comfortable with them. For example, Jim Watson [best known for solving the structure of DNA] announced he wants to have his genome sequenced and possibly published, but he doesn't want to know his APOE4 status [the gene variant that increases risk for Alzheimer's disease]. So there may be other things he doesn't want to know, but he doesn't know what they are yet.

TR: Why is it so important to have the information publicly available?

GC: We and others have raised concerns about the difficulty of maintaining anonymity [in medical records]. You promise subjects you will make the information anonymous, but it's becoming increasingly easy to re-identify an individual. This project will hopefully raise consciousness on what we need to do to encourage insurance companies and government and employers to make this safer. This has already been done in some countries, so it's just a matter of policy.

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Comments

  • Insurance discrimination
    Guest (Chris Miller) on 01/20/2006 at 12:00 AM
    Posts:
    1
    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.
    Rate this comment: 12345
    • RE:Insurance Discrimmination
      Guest (Steve) on 01/20/2006 at 12:00 AM
      Posts:
      1
      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?
      Rate this comment: 12345
      • RE: Insurance discrimination
        Guest (Chris Miller) on 01/23/2006 at 12:00 AM
        Posts:
        1
        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!
        Rate this comment: 12345
        • Re: RE: Insurance discrimination
          Sandman157 on 09/09/2007 at 7:46 PM
          Posts:
          1
          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
          Rate this comment: 12345
    • Personal Genome Project
      Guest (Pete) on 01/21/2006 at 12:00 AM
      Posts:
      1
      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.
      Rate this comment: 12345
  • Privacy HA!
    Guest (Steve) on 01/20/2006 at 12:00 AM
    Posts:
    1
    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.
    Rate this comment: 12345
  • The Personal Genome Project
    Guest (Aaron Brill) on 01/20/2006 at 12:00 AM
    Posts:
    1
    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.
    Rate this comment: 12345
  • Possible volunteers: Me and who else?
    Guest (Owen N. Martinez-Sandin) on 01/21/2006 at 12:00 AM
    Posts:
    1
    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   
    Rate this comment: 12345
  • Too inaccurate
    Guest (Pete) on 01/21/2006 at 12:00 AM
    Posts:
    1
    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.
    Rate this comment: 12345
    • The Personal Genome Project
      Guest (George Gallman ) on 01/24/2006 at 12:00 AM
      Posts:
      1
      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
      Rate this comment: 12345
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