Editorial: Privacy rights are threatened

Monday, July 19, 1999 | 9:55 a.m.

It is heartening to see that Congress appears willing to make some changes to a law it passed last year which provides more public access to federally funded research. While the legislation that passed was well meaning, critics correctly assert it also could result in an invasion of patient privacy for those involved in medical research.

As the Associated Press reported last week, Sen. Richard Shelby, R-Ala., in 1998 attached an amendment to an appropriations bill that required most taxpayer-funded research to be made public if it is requested under the Freedom of Information Act. Shelby believes that the taxpayers who foot the bill for such research should, in turn, have access to the data and other information underpinning the research. More openness, Shelby contends, will ensure that the conclusions drawn are justified. Some business groups also want this process more open since sometimes the government may base new regulations on this publicly funded research.

But members of the House are considering legislation that would repeal the law entirely, because they are concerned it went too far. For instance, some researchers told a House panel holding hearings on this issue that rape victims who are participants in government studies examining violence probably would be reluctant to do so in the future if they thought their names and details of what happened to them were made public. "There are pitfalls in unrestrained openness, including ... the chilling effect that inappropriate public scrutiny could have on the free exchange of ideas and the willingness to take risks to find answers," Harold Varmus, director of the National Institutes of Health's Department of Health and Human Resources, told the committee.

Businesses and other groups make a valid point that they should have more access to research, such as the scientific calculations that underpin these studies, but at the same time some sensitive information should be protected from public view. Repealing the law may be too extreme, but Congress should amend the legislation so that the privacy rights of individuals remain paramount.