Increase Genetic Privacy, Congressional Panel Told
A congressional subcommittee was urged to increase the privacy of individual genetic and medical records as consumer advocates raised cautions regarding improper use of such information for medical purposes.
Although there are at least four separate bills pending in the House and Senate to achieve that, Dr. Debra C. Peel, told the House Judiciary Committee’s constitution subcommittee that new legislation was needed because “the use, sale and sharing of highly sensitive indentifiable genetic and information for non-medical purposes is wide spread because our federal, constitutional and common law rights have been increasingly ignored.”
The panel, chaired by Rep. Steve Chabot (R-OH), is probing the need for federal legislation to protect the privacy of individual genetic data. In recent years 37 states have adopted laws to protect the privacy of individual genetic information, but those protections vary widely.
But Dr. John W. Rowe, Chairman/CEO of Aetna Inc., one of the nation’s largest insurance companies based Hartford, CT; said industry self-regulation was preferred over new federal laws.
Seeking to dispel what he called myths about the use and sharing of individual genetic data, Rowe said his company and others have adopted voluntary guidelines to protect the privacy of that information. Preventing insurance companies from having that information he said, “is both unnecessary and counter-productive [as] it will impair [an] insurer’s capacity” to provide service to its customers.
Peel, testifying on behalf of the American Psychoanalytic Association, added that “the genetic and medical records of our entire country, which are stored in massive data banks, are being accessed to make business, credit, education, and employment decisions without our knowledge.”
According to Peel, and Dr. Joanne Husted, senior counsel for the Health Privacy Project at Washington’s Georgetown University, people will not be able to prevent the disclosure of their medical and genetic information when the new information privacy rules adopted by the Health and Human Services Department go into effect on Oct. 15.
Under those rules, permitting insurance companies and others, to share an individual’s genetic and medical information, people will lose their right to control who has access to that information and what the use it for.
Noting that the 1999 Financial Services Modernization Act permits financial institutions to share a person’s confidential financial and medical data with third parties, whether affiliated or not, for marketing purposes, Peel said that the potential for abuse was “virtually unlimited.”
The Health Privacy Project is “particularly concerned by HHS’s decision to eliminate the [information] provider[s] consent requirement and open up people’s medical files for marketing activities without prior authorization,” according to Husted.
While noting that the HHS “claims” to have tightened its rules regarding the use of an individual’s medical and genetic information for marketing purposes, Husted said the agency “has defined the term marketing in a way that effectively legalizes some of the most egregious marketing tactics of chain drug stores and their partners, the pharmaceutical industry.”
There was no immediate response to the allegations from the HHS.
The marketing practices of both the large-chain pharmacies and pharmaceutical makers have come under attack in recent months for promoting the use of certain prescription medicines in direct response television, broadcast and print advertisements.
