The Human Genome and Patient Privacy: A Proposal to Expand Protections for Patients and Family Members

Penalties and Remedies for Violation Of Personal Autonomy

Congress should establish legislatively that the breach of confidentiality tort (through which individuals can pursue redress for violations of HIPAA) shall also apply to the provisions of the Genetic Privacy Enhancement Act which pertain to personal autonomy. Essentially, this would merely expand the prohibition against disclosure of medical information to include disclosure of one’s genetic information to oneself without consent. Congress could also consider strict liability for psychological and emotional harm, though this may be unlikely to pass.

Remedying property rights in the law requires two parts: changes in patent law, and establishment of damages for misuse of genetic information. For the first, Congress must simply establish that naturally occurring genetic sequences are considered products of nature rather than products of scientific design. With a retroactivity clause, this measure will eliminate the obstacle which gene patents pose to genetic research, and establish an appropriate lack of property rights over genetic code and data. The second, damages for misuse of genetic information, would also be tied to the restrictions in HIPAA, mirroring civil and criminal penalties for inappropriate use of medical information. This will adequately protect individual rights without adding an extra layer of legislation for health corporations to wrestle with.

Congress should also grant civil immunity to corporations who currently hold gene patents, to prevent lawsuits by patients who have been forced to pay for expensive genetic tests monopolized by patent holders. While the exorbitant fees charged for testing by gene patent holders are highly offensive to normal sensibilities, the corporations are operating within the law as it stands and should not face financial penalties for taking legal action in this case.

Conclusion

It goes without saying that much of the healthcare industry will be unhappy with such changes in legislation. However, there are more pressing interests at hand here: the right of individuals to privacy and personal autonomy, a state interest in promoting scientific development (which is currently stifled due to the practice of gene patenting), and the need for clarity over genetic and biological property rights. Indeed, the latter will be quite beneficial to researchers and health corporations, who will no longer need to fear lawsuits based on property-rights arguments. Passing this Genetic Privacy Enhancement Act, or one like it, is truly in the best interests of the American people, and would have a positive impact on scientific research and individual rights for generations to come.

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