Genetics, neuroscience, and biotechnology.

Genetics, Neuroscience, and Biotechnology Three areas of biomedicine pose dramatic dilemmas for bioethics. While medical ethicists will continue to grapple with the issues posed by the unrelenting problems of treating AIDS and cancer patients, new developments in genetics, neurobiology, and biotechnology will generate novel ethical questions. In genetics, the Human Genome Project will generate new data about the biological underpinnings of human attributes and proclivities to wellness and disease. Originally designed to uncover the DNA base sequence of the entire 100,000 or so genes embedded in human DNA, it has recently been scaled back to a mapping project including sequence analysis of nucleotide bases surrounding certain limited "hot spots." Even in its scaled-down version, the genome project raises major issues of distributive justice. By its price alone (budgeted at $109 million for 1991-92), it threatens to displace equally worthy endeavors in basic research. A good discussion of this issue is found in a recent perspectives piece by Bernard D. Davis et al., "The Human Genome and Other Initiatives," Science 249 (1990), 342-43. Once the data from the genome project begins to be assembled it will present distributive questions of its own. Which disorders are sufficiently serious and prevalent to deserve the earliest attention? Which genetic tests should be pressed into service in screening operations? What groups of persons--extended families, ethnic groups or lineages--deserve priority for investigation? Even these earliest findings will raise potential problems of privacy, confidentiality, and applicability; see "Ethics and the New Genetics," Lancet 335 (1989), 1054-55. Insurers and health maintenance organizations may demand access to personally identifiable genetic information. When should data that indicate a modest probability of future disability or proclivity to disease (for example, susceptibility to infection with HIV) be used? What is the demarcation point of certainty that warrants use of linkage data to indicate readiness of a new gene probe for marketing? This last dilemma has confronted cystic fibrosis researchers intent on developing a diagnostic test, as reported by Leslie Roberts, "CF Screening Delayed for Awhile, Perhaps Forever," Science 247 (1990), 1296-97, since the genetic mutations for cystic fibrosis have turned out to be much more complex than initially thought. To date, major insurers and underwriters have been reluctant to put genetic data into their testing requirements. Major employers are similarly hesitant about using susceptibility markers to screen workers in hazardous settings where toxic exposures may occur. This reluctance raises ethical questions of its own. If we can predict who is at high risk for heart disease, lung cancer, and bladder cancer from simple genetic tests, do we not have an obligation to make such tests widely available (assuming their high predictive value)? And what about the insurer's position that it has traditionally exercised the right to identify, exclude, or underwrite individuals commensurate to their risk status? These questions are examined in "Insurance Costs and Genetic Testing," Lancet 335 (1990), 1331. The genome project will undoubtedly identify genetic data of potentially great diagnostic value. Within the confines of the doctor-patient relationship, it is unlikely that this information will pose major difficulties. However, genetic data almost always has relevance outside the domain of this relationship, implicating members of a kindred group as carriers, likewise affected, or at risk for similar disorders. Walther C. Zimmerli explores this in "Who Has the Right to Know the Genetic Constitution of a Particular Person?" Ciba Foundation Symposium 149 (1990), 93-102. How and when should such persons be notified of their possible risk status? Sometimes, as has proven to be true for the multiple genetic mutations that cause cystic fibrosis or neurofibromatosis, the genetic data make these issues even more complex. …