Narrating genetic disabilities: social constructs, medical treatment, and public policy

The article compares three memoirs of genetically based disability: Lisa Roney's sweet, invisible body, Georgina Kleege's Sight Unseen, and Alice Wexler's Mapping Fate. The essay explores the tension between the narrow and the broad construction of disability, as demonstrated by the 1999 Supreme Court rulings on the ADA and as experienced by these three memoirists. It concludes that the approach of narrative bioethics, as exemplified by such a study of disability and illness narratives, can offer the medical and public policy community a valuable alternative perspective on genetic disability not as an incapacity, but as a set of social relations and practices.     

Public preferences and the challenge to genetic research policy

Modern genetic research requires scientists to collect, store, and study DNA samples and health information from thousands of people. Longstanding policy allows researchers to use samples and information without a person''s informed consent as long as the person''s identity is protected. Under existing policy, researchers must neither disclose study results to interested research participants nor compensate people who contribute to genetic research. Research and ethics experts developed these policy approaches without input from the people whose contributions are essential to the genetic research enterprise. A growing body of evidence shows that many research participants and would-be participants disagree with the current policy approaches. For ethical and practical reasons, participants should have a greater role in determining how genetic research is conducted.     

Putting together the pieces: recent proposals to fill in the genetic testing regulatory puzzle

The idea that genetic information is different from other medical information and therefore needs special protection has led to a regulatory puzzle where genetic testing is currently regulated under three separate schemes. Although genetic tests for over 2,000 diseases are available, less than 10% of these tests have been reviewed for clinical validity or utility. Recent action by some genetic testing companies has prompted the federal government to propose changes to the current regulatory scheme. This article discusses the current framework and the recent developments before examining some of the concerns and challenges that face the implementation of these proposed changes. The author evaluates the proposals and competing interests in order to suggest how genetic testing may best be regulated to meet the needs of the industry, clinicians, researchers, patients, and consumers.     

Statutory interpretation, capture, and tort law: the regulatory compliance defense

The regulatory compliance defense holds firms liable whose productsor product warnings fail to satisfy federal regulatory standards,but does not exculpate firms that comply. Rather, complianceis relevant evidence for a jury to consider in a products liabilityaction. This article argues that the defense should exculpatecompliant firms as a matter of law. A Congress that thoughtabout the matter would prefer this judicial construction ofan unclear safety statute. To defend this view, the articleargues that a legislature can have intentions in a normativelymeaningful sense, that claims that a Congress or its agenciesare captured by special interests should be nonjusticiable,and that, when a court is in doubt as to what a legislatureintended, it should adopt that construction of the relevantstatute that would be easiest for the legislature to correctif the court errs. In this case, it is easier for Congress tocorrect a construction that it intended to exculpate compliantfirms than a construction that it did not.     

Immigrant workers: health, law, and public policy

Immigrant workers are a large segment of the lower echelon of the U.S. labor force, and as many as 3.6 to 6 million of these workers and their families are living in the U.S. illegally. This paper examines who the recent immigrants are: explains why their current situation in the U.S. is an important public health matter; discusses the ethical and policy issues stemming from their health needs and from illegal status; and concludes with a brief look at some implications of the Simpson-Mazzoli Immigration and Reform Act, currently before Congress. The paper suggests that the illegal status of undocumented workers intensifies their health risks; that the immigrants' responsibility for budget short-falls in public services is not as clearcut as frequently assumed; and that legislation aimed at regulating the status of immigrant workers in the U.S. is unlikely to solve many of the central problems.