The surge in genetic research and technology, fuelled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.’ Genetic tests can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability, or early death. These tests can reveal information about an individual's carrier status, that is, the likelihood of (...) parents passing on to their children a genetic condition, and about the health of the individual's family members. Although genetic information provides the promise of early detection and treatment of certain illnesses and disorders, it also poses risks. As a result of the increase in genetic testing and information, legal issues regarding employment discrimination on the basis of genetic information are emerging. (shrink)

All scientific activity involves some method of observation and some method of recording what is observed. These activities can be carried out in ways that involve little interaction between subject and object, as is the case when a telescope observes a far-away star. At the other end of the scale are experiments in modern high energy physics in which there is little distinction between the observer and the observed, and the process of observation materially affects the data that are recorded. (...) In this regard, research on human phenomena resembles modern physics more than it does classical astronomy.Research on human phenomena, however, differs from modern physics in the way in which it affects that which is observed. Both the procedures and the findings of research on human phenomena alter the modes of thinking and the self-awareness of the objects of study. (shrink)

Rapid advances and exponential growth in computer and telecommunications technology have taken individual records and papers revealing the most intimate details of one’s life, habits, and genetic predisposition from the private sector into the public arena in derogation of privacy considerations. Although computerized medical information offers a means of streamlining and improving the health care delivery system through speed and enormous storage capacity, it also presents new challenges as it affects the right of privacy and expectation of confidentiality, creating serious (...) ethical and legal issues. Other considerations include constitutional matters such as loss of liberty when one is compelled to remain in an undesirable or unsuitable job so that insurance will not be canceled or the inability to secure another more suitable position due to genetic predisposition and denial of equal protection of the laws if one is stigmatized because one belongs to a certain ethnic or racial group that exhibits a particular genetic propensity. Collateral questions concern the propriety of disclosure of confidential health care information, including genetic data. This article also considers the proposed federal guidelines for a health information privacy law. (shrink)

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The (...) central goals of the GPA are twofold: to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons. (shrink)