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Weighing privacy and progress, Congress considers limits on patient data

Yale Medicine Magazine, 1998 - Fall


Advances in genetic screening abilities have put the medical world on alert about threats to patient privacy. In August, Sen. Christopher Dodd, D-Conn., came to the medical school to ask faculty about ways to ensure the privacy of genetic records.

Sen. Dodd, who is sponsoring legislation that would bar insurers and employers from discriminating based on genetic predisposition to disease, told reporters, “The last thing I would want is any suggestion that we are trying to limit the importance of moving forward with genetic technology.”

Several faculty members who met with Sen. Dodd agreed. Maurice J. Mahoney, M.D., J.D., professor of
genetics, pediatrics and obstetrics and gynecology, pointed to the importance of the flow of information to physicians and family members. “One has to reach a balance,” he said. “We don’t want to inhibit that kind of flow. If we develop a culture in which we are fearful of the consequences of sharing information within the profession, that is to the detriment of health care. On the other hand, I have fears about allowing medical information to flow freely in the economic structures of our society and government.”

Sen. Dodd told the gathering, “It seems to me we ought to be able to strike a balance here in pursuing that, while, at the same time, offering people some sense of security that this information is not going to be used to deprive them of insurance or employment.” According to Sen. Dodd, discussions with constituents showed strong concerns about privacy. “The public response to that issue dwarfed every other issue.”

Also present at the press conference were patients and families concerned about the potential economic and professional consequences of the genetic diseases they carry. Peter Przybylski said his 11-year-old daughter Ashley has carbamoyl phosphate synthase deficiency, in which blood ammonia levels can become lethal without proper management. “I would hate to see her have to take a position based on her medical coverage, as opposed to what she wanted to do,” he said.

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