While a bioethics presentation Wednesday night met with sparse student attendance, it did feature a slide show of objects taken out of people’s chest cavities, at which the speaker gesticulated wildly with an audience member’s cane that happened to be handy.
Speaking before a group of about 30 spectators, Haavi Morreim of the University of Tennessee, a media liaison for the first human trial of the Abiocor artificial heart, gave a talk entitled “Is Secret Science Good for Your Health? Patient Privacy Versus the Public’s Right to Know.”
In his talk, Morreim focused on how media demand for up-to-the-minute information on those undergoing groundbreaking experimental treatment can undermine both patient well-being and the scientific integrity of the research. She stressed that in high-profile cases it is hard to keep the patient’s identity under wraps, even if his or her name is never explicitly made public.
“It is not a small thing to maintain one’s privacy,” said Morreim.
Specifically she discussed her involvement in the medical treatment of Bill Tools, who became the first person in over 20 years to receive an artificial heart in July 2001. Morreim served as head of the Independent Patient Advisory Council (IPAC), which was set up by the manufacturer of the artificial heart to help the patient choose when and how to interact with the media.
Morreim said her job was not an easy one.
“I was in the air when the story broke,” she said. “When I got to Louisville [the site of the operation] all hell was breaking loose.”
For the first few weeks after the operation, the various groups involved held press conferences nearly every day. After about three weeks, the manufacturer of the artificial heart began to restrict media access, prompting the New York Times to accuse them of issuing a gag order, Morreim said.
But Morreim said this action and others like it are intended to safeguard the interests of both the patient and the public.
“The public has the right to know the final results,” she said. “But most trials can’t release interim anecdotes. It’s not in the public’s interest to create artificial success and artificial failure.”
Morreim’s ideas met with mixed responses.
“I think that in participating in such research you surrender some of your privacy,” said an audience member in a post-speech discussion time. “That is the price you have to pay for taking such a giant step forward for mankind.”
However, many of the attendees said they enjoyed listening to Morreim’s ideas.
“I would like to see a more diverse section of the New Haven community participate in these exchanges,” said one man in the audience who declined to give his name. “But I think Yale’s bioethics department is on the right track in doing this.”
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