"Protecting Genetic Privacy: Why It is So Hard to Do"

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By:Aaron Hall

Mark Rothstein began his presentation by assuring the audience, "Although it will be more complicated than most people imagine, protecting genetic privacy and confidentiality is a worthy goal." Steps taken toward this goal so far, however, he characterized as misguided and simplistic. Before explaining this position further, he gave the audience useful background information on relevant issues.

Rothstein defined "privacy" as the limited access to a person, the right to be let alone, and the right to keep certain information from disclosure to other individuals.

"Confidentiality," he said, is the right of an individual to prevent the redisclosure of certain sensitive information that was originally disclosed in the confines of a confidential relationship. Protecting confidentiality can be difficult because others think they should have the right to see an individual's information.

Rothstein listed eight nonmedical uses of genetic information: insurance, employment, criminal law, personal-injury litigation, domestic relations, forensics, education, and commerce. Data also are being used for identification and in such contexts as immigration, paternity, settlement of estates, kinship, and schools.

In criminal law, defendants already are attempting to use as a defense unproved theories of genetic predisposition to violent behavior. When such a defense fails, defendants invoke similar claims as a method of mitigating their punishment at the sentencing stage.

Should defendants in personal-injury cases be allowed to compel victims to undergo genetic testing to determine what their life expectancy might have been before the accident? In child-custody cases, should the risk of an inherited disease keep either parent from gaining custody? How much genetic testing should be authorized before children are placed for adoption? Should a mortgage company be allowed to require a genetic test to assess an applicant's life expectancy?

Because of the financial incentives involved, Rothstein said, confidentiality is particularly difficult to maintain in health insurance and employment. Laws have been enacted in 16 states to prohibit insurance companies from using genetic information to deny coverage or raise health insurance rates. When these laws were passed, Rothstein pointed out, people thought they were wonderful. Now, however, it has become clear that they protect only individuals who are asymptomatic. Once symptoms become apparent, the laws don't apply. Rothstein suggested that a comprehensive law would need to say that no insurance company may deny coverage or raise rates based on an individual's past, present, or predicted health status.

On the federal level, Rothstein cited the Health Insurance Portability and Accountability Act (HIPAA), which applies to employer-based and commercially issued group health insurance. Although HIPAA is a step forward, he said, it does not apply to the unemployed, and employers are not required to provide any health insurance or specific benefits.

Rothstein said, "I think we are living in a rather hopeful --or naive-- world, where we may temporarily have been able to contain double-digit increases in medical costs and where we've been able to put our finger in the dike on the issue of the uninsured. But there are problems lurking, and I don't know that we are doing enough to address those issues." Moving to employment discrimination, he cited data showing that 85% of people surveyed said they should be protected from having employers obtain their health records. Some employers, on the other hand, feel that they can save a great deal of money by eliminating prospective employees and dependents whose medical expenses are likely to be high.

In March 1995, the Equal Employment Opportunity Commission issued an interpretation that is helpful but not the final word, Rothstein continued. Basically, it says covered entities that discriminate on the basis of genetic predisposition are regarding the individuals as having impairments, and such individuals are covered by the Americans with Disabilities Act. The problem here, Rothstein said, is that this interpretation is not binding on the courts and does not apply to unaffected carriers of recessive and X-linked disorders. It also does not prohibit employers from requiring access to employees' clinical records, which could include genetic information. The consequences of this interpretation, Rothstein said, are that it permits disclosure of sensitive information within companies and discourages at-risk people from being tested.

Some 13 states have enacted laws that prohibit employers from requiring genetic testing or from using genetic test results to discriminate in employment. Unfortunately, Rothstein said, these laws are either too narrow or too broad. They don't protect genetic information in medical records or prevent employers from gaining access through health-insurance claims.

Rothstein then raised the questions: Is genetic information unique? Should it be protected separately from other forms of information? He listed six arguments for considering genetic information different from other kinds of medical data: It reveals the health of family members; it reveals parentage, reproductive options, and future health risks; it goes to the essence of who and what an individual is; and it's regarded as unique by individuals and third parties, who often overuse it. Rothstein said that, even if we are satisfied that genetic information is unique, it should not necessarily be protected separately. First, people don't know exactly what genetic information is. Second, it probably is impossible to segregate it from other information in a clinical record; and third, enacting genetic-specific legislation may be self defeating because it further stigmatizes people with genetic conditions.

The problem of genetic discrimination cannot be solved by a single law, Rothstein concluded, and resolution of the issue raises fundamental concerns of equality in the system. Due to the complexity and difficulty of the challenge, we should start to address these problems in depth.

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