Senate bill addresses genetic info misuse
Someone can look at you and know a lot about you whether you are a man or woman, short or tall, thin or fat and use this information against you. What if the unprincipled insurance agent, unethical employer, or unscrupulous lawyer could find out even the most personal details about you simply by surfing the Internet?
Ethicists and public policy experts are concerned about the use of genetic information and storage of that information and patients’ medical records in computer databases. Earlier this year, the U.S. Senate held two public hearings to assess the misuse of genetic information and patient medical records. In addition, a comprehensive bill, the Genetic Confidentiality and Nondiscrim-ination Act of 1996 (S.1898) was introduced by Sens. Peter Domenici (R-NM), Carol Mosley Braun (D-IL), and Olympia Snowe (R-ME).
According to the bill, "The potential for misuse with respect to genetics is tremendous since genetics transcends medicine. It has the potential to penetrate many aspects of life including employment, insurance, forensics, finance, education, and even one’s self-perception."
The bill was read twice and referred to the Committee on Labor and Human Resources. "This issue is quite important but simply lost out in the priority to pass the welfare reform, mandatory hospital stays [for new mothers], minimum wage, and other issues before the committee this year," says Roger Elliot, a staff member of the Senate committee. "Something will have to happen with this bill next year. The issue is too critical to be lost," he says.
Congress will want to start a public dialogue on the issue of confidentiality of genetic information and medical records "before it hits the courts," says Elliot. S. 1898 is likely to be reintroduced in the next session of Congress this month. The provisions include a specific section on use of DNA for medical research, and require strong enforcement by an institutional review board of safeguards for protecting confidentiality, prohibition against including research records in the patient’s medical records unless authorized by the patient, and limits on disclosure of data to a deceased person’s family.
The law requires the researcher or research institution to pay any costs or fees associated with the disclosure of genetic information, including optional genetic or psychological counseling.
In addition, research use of DNA must follow the law’s other general rules as listed below:
• DNA samples and genetic information cannot be collected, stored, analyzed, nor disclosed without the individual’s written authorization. The authorization must state the exact body source from and the manner in which the DNA will be collected, and a description of all authorized uses of the sample.
• Consent to or refusal of the collection and analysis of a DNA sample must be voluntary.
• The person collecting a DNA sample must inform the person of the information that is reasonably expected to be derived from the genetic analysis and the uses, if any, that he or she will derive from the genetic analysis.
• A person whose DNA is collected, tested, and/or stored has the right to inspect records containing information, the right to revoke consent at any time prior to commencement of the analysis, and the right to have the DNA sample destroyed.
• The person collecting the sample must make genetic and psychological counseling available and optional to the patient.
• A person whose DNA is collected, tested, and/or stored may designate another person as his authorized agent to make health care decisions regarding the DNA sample after his death.
• No person may disclose genetic information except as specified in the written authorization.
• A person storing DNA records must adhere to an owner’s written request to amend those records within 90 days.
• An employer may not seek to obtain or use genetic information of an employee or a prospective employee, or require the collection of DNA for an employee or prospective employee.
• An insurer offering a policy may not terminate, restrict, limit, or otherwise apply conditions to coverage of an individual or family member on the basis of any genetic information, or require such testing to obtain coverage.
• Collection and analysis of DNA from minors, and newborn screening, is prohibited unless the parents give written authorization and certain requirements are met.
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