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Apr 1, 2010 (Vol. 30, No. 7)

Cracking Open Genetic Privacy

Common Good Is Best Served by Not Building Walls Around This Deeply Personal Information

  • Medical Ethics

    Medical ethics has traditionally relied on four basic principles—to do good, to avoid harm, to respect patient autonomy, and to play fairly. Privacy bolsters these standards by creating an atmosphere of trust in which expectations are met and interests are protected.

    Individual wellbeing must not be walled off from the good of the community. The more quickly information about genetic traits and disease associated genes can be gathered, the more quickly will genetic medicine’s promise be realized.

    The Personal Genome Project (PGP) at Harvard Medical School is betting that, by making individual genomes and traits—physical, medical, and environmental—publicly available medical research will be thrown into overdrive by fostering quick, reliable associations between genotype and phenotype and environment.

    The PGP hopes to attract 100,000 people whose genomic data will assist in the identification of genetic variants associated with common complex diseases such as cardiac disease and breast cancer. Thus far, 10 brave souls have their medical histories and genetic profiles posted on PGP’s insecure website in the interest of a greater understanding of the role of genetic information in human health—ethically speaking, in the interest of the common good.

    Reaching ethical conclusions about genetic privacy is challenging for two reasons: First, it is inherently difficult to understand the subtleties of genetics and genetic interactions. Second, it is complicated to accurately predict  the implications and consequences—short- and long-term, intended and unintended—of amassing volumes of genetic data in pursuit of a better understanding of disease or the development of individually tailored pharmaceuticals. The following questions may help our thinking about these complexities.

    • What benefits and what harms can come to both individuals and communities from unfettered access to genetic information? From restricted access?
    • What expectations and interests do stakeholders—especially patients—have with regard to genetic information? What claims about privacy can stakeholders make?  Do some have stronger claims than others?
    • How does the common good modulate our current notions of individual choice and privacy concerning genetic information?

    I imagine that humans have always been aware of genetics and family history—brothers and sisters resemble each other, blue eyes “run in the family,” breast cancer or Huntington disease strike generations with eerie frequency. Much of our genetic information has never truly been private, being reflected in our appearance, behavior, and disease. Unlocking the potential of genetic medicine asks us to create cracks in the wall of medical privacy in the interest of the common good, and to do so in an atmosphere of transparency and reciprocity with sensitivity to the deeply personal nature of the information we share.


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