Foreword: Phase II of the Genetics Revolution: Sophisticated Issues for Home and Abroad

Abstract

The distinguished health law and policy scholars we invite to contribute to the American Journal of Law & Medicine's annual symposium issue are given carte blanche to write about any aspect of the designated topic that appeals to them. The authors in this year's genetics symposium, The Genetic Revolution: Conflicts, Challenges and Conundra, are already well known for their work in the field-in fact three of them have just co-authored the only casebook specifically dedicated to the law, policy and ethics of genetics-and we deliberately asked them for relatively short pieces on the theory that taken together their articles would build a unique conceptual whole. We are always intrigued with what our experts choose to write about in these annual symposia, and this year is no exception. Our eminent authors have produced an array of articles on Phase II of the Genetics Revolution that take on a wide spectrum of sophisticated legal questions, from the specifically global to the explicitly individual. In looking back to the Symposium issue that AJLM produced ten years ago, The Human Genome Initiative and the Impact on Genetic Testing and Screening Technologies,2 many of the same issues in genetics are still relevant, but they have taken some interesting twists and turns in the interim. In 1991, the debate on prenatal testing focused on why social norms encourage pregnant women to weed out fetuses with apparent disabilities, suggesting that prenatal testing reflects intolerance in our society.3 Now that prospective parents are expected to get prenatal testing, practically as a matter of course, we are wondering whether testing is really healthy for all concerned.4 Discourse on genetic testing in the workplace has advanced from advocating regulation that would limit genetic testing and disclosure? to encouraging genetic testing, but forbidding discrimination.6 Genetic discrimination in the workplace concerned those who wrote in 1991 as well,7 but today we can better recommend policy by evaluating the adequacy of recently-passed legislation to protect against genetic discrimination.8 While the bioethical issues that were discussed in the 1991 symposium still surface, improvements in available scientific data enable us to address social, ethical and legal implications at a more sophisticated level. Several law journals followed in the footsteps of our 1991 symposium to focus on genetics-related themes. Some have done symposia on broad subjects related to genetics and the law,9 while others have covered more targeted fields such as genetic privacy and family disclosure,10 the implications of identifying the breast cancer gene,ll maintaining autonomy with the advancements in genetics,12 legal disputes over body tissue,13 international implications on genetic researchl4 and racial issues associated with genetic testing.15 In this current symposium, we hope to broaden the available literature on genetics and the law, and further the dialogue surrounding previously raised issues. The thought-provoking articles in this issue of AJLM demonstrate that for all its medical promise, the science of genetics is a double-edged sword. On the one hand, genetics offers unprecedented insight into the mechanisms of diseasel6 and has stimulated a plethora of new theories about ways to outsmart disease processes.17 On the other hand, it brings with it disturbing potential for detrimentally altering the character of social and employment relationships, and for distorting our deeplyingrained notions of what it means to be human.18 Our first two articles assess global rather than more narrowly conceived perspectives relating to human cloning and genetic enhancement. The next three pieces focus more closely on the impact of genetic advance on family relationships, reproductive decision making and the security of employment. Finally, the last two articles in the symposium contribute a detailed analysis-from differing perspectives-of privacy concerns related to genetic information. …