5.2. Genetic Privacy and Discrimination

 pp. 51-53 in Bioethics and the Impact of Human Genome Research in the 21st Century

Author: Robert Kneller (RCAST, Tokyo University; USA)

Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

Copyright 2001, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
Background

 Most of the human genome containing about 100,000 genes has been sequenced. New genes are their functions are being identified almost every day. Many diseases and many traits that are considered good and bad have a genetic basis. Within about 10 years, many of these genetic bases will be known. If we know a person's genetic blueprint, we will be able to make good estimates of the risks for developing various diseases as well as predispositions to depression, hyperactivity, high or low intelligence, etc. Because these predispositions are unchangeable, determine to a large extent the our individual identities, and shape how we are perceived by other persons, access to this information by ourselves and others is a sensitive issue. Already there are tests for between 500 and 1000 genes that affect health, and this number is increasing rapidly.

In the U.S., people are concerned that access to personal genetic data might threaten employment or promotion chances, as well as access to health, disability and life insurance. This talk will discuss legislation to deal with these concerns. However, such information may also affect marriage opportunities and relationships among family members and close friends. Ultimately, such information may have a profound effect on the way we regard ourselves and others_specifically on our notions of individual freedom and responsibility and our expectations of ourselves and others.

Employment and insurance discrimination.

the problem

 There have been examples of Americans who have lost or been denied insurance, or who have lost or been denied employment or promotions because of genetic test results indicating increased risk for particular diseases. Although these examples may be isolated, some have been widely reported and there appears to be widespread concern that employment and insurance may be jeopardized.

On the other hand, employers often argue that some genetic susceptibilities to disease are highly relevant to certain types of potentially hazardous occupational exposures and it makes sense to keep vulnerable persons out such of such work.

Insurers argue that access to genetic information will allow them to assess individual risk more accurately than they do in traditional underwriting. Persons with low genetic risk profiles will have to subsidize persons at high risk to a lesser extent than they do now. Prevention programs could be targeted to persons who need them most. Insurers maintain that if they have access to individual genetic profiles, the number of persons refused insurance and the average premiums would probably be no higher than they are today. They also note that denying insurers access to genetic profile data held by their insureds would enable the insureds to unfairly manipulate the system. I.e., the persons most likely to demand insurance would be those who knew they had a predisposition to illness or early death.

Few, if any insurance companies require genetic tests as a condition for enrollment. However, if available, most will use such information to make decisions concerning eligibility and premiums, unless they are legally prohibited from doing so.

Therefore, the question arises: under what circumstances can insurers and employers have access to genetic data and when can they collect, use and distribute such data.

legislative solutions

 As of 1996, Austria, Belgium, the Netherlands and Norway had laws restricting the use of genetic information by insurance companies. For example, the Dutch law prohibits life insurers from requesting or using genetic information for policies valued at less than 200,000 guilders ($50.000). At least 28 U.S. states have passed laws to limit access or use by insurers or employers, however these restrictions vary considerably.

In 1997, a U.S. law intended primarily to make sure that persons changing jobs do not lose health insurance coverage prohibited group health insurance plans (i.e., employment-related health insurance plans) from refusing to enroll persons on the basis of genetic information. However, employment-related group health plans, by their very nature, usually are open to all employees, so the likelihood of genetic discrimination is low. Moreover, this prohibition applies only to persons without symptoms of the disease associated with a genetic predisposition. Furthermore, there is no prohibition against the employer or the insurer requesting, collecting or disclosing genetic information. Could an employer dismiss or refuse to hire a person because of genetic test results? The Americans with Disabilities Act, which was enacted to limit employment discrimination against disabled persons, may prevent this, buts this is not certain.

Since 1998, a bill has been under consideration in the U.S. Congress [H.R. 2457] that would prohibit individual as well as group health insurance plans from (1) requesting or collecting genetic information (unless voluntarily authorized in writing) and (2) denying coverage or adjusting premiums on the basis of genetic information_including information about family members and information about a request for genetic testing or services. Similarly, it would prohibit employers from requesting or collecting genetic information (except for carefully regulated programs to detect genetic damage as a result of occupational exposures) and (2) basing hiring, discharge or promotion decisions upon such information. This bill provides a high level of protection against both health insurance and employment discrimination_at least of persons without symptoms of genetic disease.

One aspect that is particularly troubling to both insurers and employers is the broad definition of "predictive genetic information" which includes information about the health history of family members. Such information is clearly information from which inferences can be drawn about genetic predispositions to disease. At the same time, such information is part of a routine medical history and is found throughout medical records and even in many job application forms. In other words, the distinction between what information should be private and which need not be private is unclear.

Another troubling provision for employers is the absence of any provisions allowing (1) collection of genetic information that has scientifically proven relevance to potentially hazardous occupational exposures and (2) employment decisions based upon such information. While employers believe such exceptions are appropriate, defenders of the current bill believe such exceptions would provide a large loophole allowing employment discrimination, and would also decrease incentives for employers to reduce hazardous workplace exposures.

An alternative anti-discrimination bill [H.R. 2555], which contains just such a generous loophole "if consistent with business necessity," has also been under debate in the U.S. Congress for over two years.

These details about U.S. draft legislation show the complexity of the genetic privacy debate and the difficulty of finding a fair compromise that meets the needs of all parties.

Adopting some form of guaranteed universal health insurance in the U.S. would go a long way towards solving problems associated with the increased availability of genetic data. The presence of universal health insurance in Japan and most European countries has probably muted the genetic discrimination and privacy debate in these countries. However, if employers are responsible for paying the majority of their employees' health care costs (as is usually the case in Japan), employers will still have an incentive not to hire persons whom they know are genetically predisposed to disease.

Social and philosophical dimensions

However, other problems will remain. Interviews with clinical and research geneticists suggest that Japanese families are deeply concerned about the social implications of genetic testing. In particularly they are concerned that the entire family will be stigmatized if a family member is found to have a gene for a serious disease and that prospects for marriage and having children for all members will decrease.

At present, the only regulations relating to genetic privacy, cover participants in Japanese government sponsored genetic research projects. In this case, the protections with respect to voluntary participation, informed consent and confidentiality of data are quite strong. However, these regulations cover only a small subset of genetic testing.

One possible solution for the U.S., Japan and other countries is to establish a system for anonymous genetic testing and counseling. However, to guarantee confidentiality, such a system would probably have to be outside normal health insurance systems and therefore patients would have to pay for these services themselves. Also, if disease genes are detected, patients will have to re-enter the normal health insurance system for preventive care. At least in the U.S., insurance companies still have the right to ask for information on genetic test results in most states and if the patient has answered untruthfully, their coverage may be terminated.

The greatest challenge posed by the increasing ability of genetic tests to predict one's future goes beyond the issues discussed above. The possibility exists that this will fundamentally change how we view ourselves and other persons, and our sense of individual freedom, responsibility and ability to control one's destiny. Our ability to do something about the genetic predispositions that we discover may have an important bearing on this issue. If palatable, affordable means are available to prevent or cure the diseases to which we find ourselves susceptible, such testing will likely enhance both our health and our sense of control over our destinies. The more distant challenge then will be how to deal with genes that bear upon factors such as intelligence, personality, etc. Will ignorance or knowledge be better? Will being able to change these factors (for ourselves and/or our offspring) or not being able to change these factors, or avoiding change even if it possible, be better? We may have partial answers. In any case, once we know our genetic blueprints, our perceptions of ourselves and of our neighbors will change forever.

Please send comments to Email < asianbioethics@yahoo.co.nz >.

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