The Stateswoman Archive

Who Should See Your Genetic Code?

by Carole Doeppers

Last June President Clinton announced what he considered to be “the most wondrous map ever produced by humankind.” This pronouncement heralded the near completion of the entire sequence of human genes. Although incomplete, the draft genome offers a treasure-trove of information for researchers and opens the way for diagnoses and improved treatments, if not cures, for diseases like cystic fibrosis, muscular dystrophy, Huntington’s disease, Lou Gehrig’s disease, Alzheimer’s, Tay Sachs, and certain forms of cancers.

Like so many historic discoveries in biotechnology, completing this blueprint of all human life has opened a Pandora’s box. It generates knowledge faster than our legal and social service systems can respond. It challenges the balance of power between corporate rights and human rights. It also raises a host of troubling questions.

  • Who should “own” and have access to genetic test results and genetic information? Patients and physicians alone? Government? Researchers? Pharmaceutical firms? Health and life insurance companies? Employers? Entrepreneurs? Marketers?
  • How can the accuracy of genetic test results be assured, especially if/when they are used for secondary purposes?
  • Once patented, should decoding of the human DNA be in the public domain and treated as commodity having commercial value?

These questions and others frame a new set of concerns that merit close examination if society is to weigh the trade-offs and unintended consequences of the Genome Project.

“Risk Hedging”: Insurance companies and financial lenders have strong incentives to hedge their financial risks by identifying individuals perceived at increased risk for future illness or disability. As such, potential or pre-existing health-related conditions are often sought through “DNA profiling” and “genetic scoring.” Like credit scoring, these methods of underwriting are based on an arbitrary criteria and may lead applicants to avoid medical tests, shun new treatments, and be less than candid with their doctor.

Employment discrimination: Given skyrocketing health costs, some employers are eager to learn about the genetic disposition of employees and their families. But making hiring and promotion decisions based on health predictions, rather than job qualification and performance, is an unethical business practice that invites discrimination and stereotyping.

Mixing race and genetics: Whenever race and genetics are combined, people become wary. For instance, last March Privacy Journal reported that Ohio’s Attorney General had notified 134 African-American employees (but no one else) urging them to provide samples of their genetic identity. The markers were to serve as control samples for a statewide database of DNA specimens taken from crime scenes. After a public outcry, the Attorney General withdrew her plan and apologized to her African-American staff for singling them out.

Lack of statutory protections: Along with 34 other states, Wisconsin prohibits genetic test discrimination by insurers and employers. But to date, only a patchwork of federal genetic protections exist. Last summer President Clinton signed an executive order barring the use of genetic information in hiring and promotion in the civilian federal work force. The American Disability Act prohibits employers from discriminating against the disabled. And the Health Insurance Portability and Accountability Act of 1998 prohibits group health plans from using genetic information to limit eligibility. However Congress has been slow to enact comprehensive genetic safeguards that cover both the public and private sectors.

Only when comprehensive genetic privacy safeguards are enacted will the public be assured that cracking the genetic code will not inadvertently deprive individuals of insurance, employment, and equal protection under the law. To insure that these basic civil liberties are not jeopardized, several fundamental principles must be institutionalized:

  • Patients themselves - in concert with their physician - should own their own genetic test results and genetic information.
  • A person’s genetic code must be “sealed” against release and reuse in the absence of affirmative and informed patient consent
  • Genetic screening and control samples for large-scale DNA databases must be truly voluntary (except for criminals).
  • Criminal penalties for corporate trafficking and unauthorized use and/or release of genetic information must be rigorously enforced.

For society to benefit from scientific advances made possible by the Human Genome Project, it is essential that individuals control the use, reuse and potential misuse of their own genetic map. Otherwise, fear may keep Jewish women from being tested for Tay-Sachs and breast cancer. Fear may keep African Americans afflicted with sickle cell anemia from seeking a better job. Fear may keep people from seeking preventive medical treatments. Fear may discourage participation in clinical trials. A dearth of legal and ethical protections may curtail employment opportunities and unfairly limit insurance coverage.

If these fears become reality, modern society will become stratified between “genetic haves” and “genetic have-nots.” While such a situation may benefit private interests, it certainly does not serve the public interest. Author Jeremy Rifkin, sums up the importance of minimizing harm resulting from our new, and still imperfect, genetic knowledge: “The Biotech Century comes to us in the form of a grand Faustian bargain. We see before us the lure of great strides and advances and a bright future full of hope. But with every step we take into this Brave New World, the nagging question, `At what price?’ will haunt us.”

Carole Doeppers is a privacy consultant, and the former director of the American Civil Liberties Union of Wisconsin’s Data Privacy Project. She can be reached at 608-250-1769.

This article first appeared in the december 2000 issue of the Wisconsin Women’s Network’s newsletter The Stateswoman.