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Lawyer examines intersection of genomics, ethics, law

Though the completely sequenced human genome is still new, scholars are already discussing the ethical ramifications of its potential use in medicine.

John Robertson, research professor of law at the University of Texas, spoke to a crowd of about 35 faculty members and students about "The $1,000 Genome: Ethical and Legal Issues."

Robertson said the idea for the lecture came to him after hearing recent pronouncements in the medical community that a single person's completely sequenced DNA, or genome, may one day be available to patients for $1,000. Even if the $1,000 genome never becomes a reality, he said, "the discussion is helpful for focusing our attention on unresolved ethical issues that exist today."

He quickly listed some potential advantages for a whole genotype, including use in identifying hereditary diseases, susceptibility to acquired diseases and potential responsiveness to different treatments. Barriers to the technology include existing patents, the sheer volume of work, high cost and a need to educate health care providers and patients.

The large amount of data contained in a genome creates risks that some information could be abused. In response, Robertson addressed the legality of ownership of a person's genome.

"There should be no sequencing of DNA without the person's consent," Robertson said. "The public will have to have some confidence that this information will be protected."

Robertson warned that although there does exist a patchwork of state privacy laws, there is no nation-wide protection from potential abuses.

"Constitutional privacy, a misnomer for autonomy, has been extended to reproductive rights, but not yet to personal information from the body," Robertson said.

In the lecture-sponsored by Duke University's Center for the Study of Medical Ethics and Humanities; Center for Genome Ethics, Law and Policy; and the Kenan Institute for Ethics-Robertson also shared his vision of genome sequencing, if it should display obvious medical benefits that outweigh its potential risks.

"If it serves a health care need, it should be available for the entire public," Robertson said. "This is not something that should be available to the wealthy only."

Questions from the audience focused on potential risks posed by the information, including its undesired applicability to family members of the genotyped individual, and its misuse by commercial companies. Robertson stressed that although the genome is new, these questions are "issues of consent and privacy we've been dealing with for a long time."

Reaction to the talk was enthusiastic.

"I'm really interested in the relationship between genomic science and public policy," said sophomore Philip Kurian. "He did a good job of addressing things that, from a scientific perspective, we sometimes miss."

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