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Book reviews The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas Edited by Raymond A. Zilinskas and Peter J. Balint Praeger Press. Westport, CT 2001. Pp. 144 One hundred years ago, social scientists were entering the century wherein race would become the most dynamic social force in American society. This was a period in which racial dominance by whites was accepted, codified, and justified by theories on the biologic inferiority of blacks and other non-white racially classified social groups. The achievements of the profession in challenging these racist notions and helping to achieve a more equitable society were important contributions to the history of human rights and social justice. Today we are on the threshold of another scientific revolution. It is one that will unravel some of the fundamental mysteries of the biology of the human species, namely the human genome. The Human Genome Project represents the mapping of the genetic codes of our existence as homo sapiens as well as those of other species. As a matter of fact, not only have we recently discovered that the human genome consists of far fewer than 100,000 genes (probably closer to 40,000) but there may be only about 17,000 or so genes that separate us from fruit flies. It is as though we have been riding in a supersonic jet for 3 million years and we are only now beginning to understand what makes it soar or plummet. Any scientific revolution of this magnitude carries with it, of course, profound social implications. Fundamentally, this revolution will likely confirm, threaten, and challenge prevailing conceptions of human diversity. In this connection, the issue of “race differences” becomes a prominent point of departure. This is one of the key topics of the excellent work edited by Raymond A. Zilinskas and Peter J. Balint which is based on a timely and thoughtful 1997 conference of scholars, diverse laypersons, and policy makers in Maryland. It is a very well organized and superbly edited book. The chapters flow quite easily and are presented in a lucid manner making it an ideal supplementary text for an introductory course in the social or behavioral sciences, minority health, biology, ethics, or public health. Two attractive features of this concise volume are that one, it raises some of the essential questions and topics about issues of concern to minority populations in a multidisciplinary forum consisting of policy makers, scholars, community leaders, and laypersons. Secondly, you do not have to be a geneticist or basic scientist to profit from this work and to learn a good deal about the Human Genome Project. Race & Society 3 (2000) 193–195 1090-9524/00/$ – see front matter © 2000 Elsevier Science Inc. All rights reserved. PII: S1090-9524(01)00029-8

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Page 1: The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas: Edited by Raymond A. Zilinskas and Peter J. Balint Praeger Press. Westport, CT 2001. Pp

Book reviews

The Human Genome Project and Minority Communities: Ethical, Social, andPolitical DilemmasEdited by Raymond A. Zilinskas and Peter J. Balint Praeger Press. Westport, CT 2001.Pp. 144

One hundred years ago, social scientists were entering the century wherein race wouldbecome the most dynamic social force in American society. This was a period in whichracial dominance by whites was accepted, codified, and justified by theories on thebiologic inferiority of blacks and other non-white racially classified social groups. Theachievements of the profession in challenging these racist notions and helping to achievea more equitable society were important contributions to the history of human rights andsocial justice.

Today we are on the threshold of another scientific revolution. It is one that will unravelsome of the fundamental mysteries of the biology of the human species, namely the humangenome. The Human Genome Project represents the mapping of the genetic codes of ourexistence as homo sapiens as well as those of other species. As a matter of fact, not only havewe recently discovered that the human genome consists of far fewer than 100,000 genes(probably closer to 40,000) but there may be only about 17,000 or so genes that separate usfrom fruit flies. It is as though we have been riding in a supersonic jet for 3 million years andwe are only now beginning to understand what makes it soar or plummet.

Any scientific revolution of this magnitude carries with it, of course, profound socialimplications. Fundamentally, this revolution will likely confirm, threaten, and challengeprevailing conceptions of human diversity. In this connection, the issue of “race differences”becomes a prominent point of departure.

This is one of the key topics of the excellent work edited by Raymond A. Zilinskas andPeter J. Balint which is based on a timely and thoughtful 1997 conference of scholars, diverselaypersons, and policy makers in Maryland. It is a very well organized and superbly editedbook. The chapters flow quite easily and are presented in a lucid manner making it an idealsupplementary text for an introductory course in the social or behavioral sciences, minorityhealth, biology, ethics, or public health.

Two attractive features of this concise volume are that one, it raises some of the essentialquestions and topics about issues of concern to minority populations in a multidisciplinaryforum consisting of policy makers, scholars, community leaders, and laypersons. Secondly,you do not have to be a geneticist or basic scientist to profit from this work and to learn agood deal about the Human Genome Project.

Race & Society 3 (2000) 193–195

1090-9524/00/$ – see front matter © 2000 Elsevier Science Inc. All rights reserved.PII: S1090-9524(01)00029-8

Page 2: The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas: Edited by Raymond A. Zilinskas and Peter J. Balint Praeger Press. Westport, CT 2001. Pp

Two of the outstanding chapters focusing on the vulgarity of genetic conceptions of raceare by two highly regarded anthropologists Fatimah Jackson and Jonathan Marks. TheJackson article on “Race, Diversity, and American Science” is quite exemplary as it providesa little known historical fact of the role of Ms. Henrietta Lacks, an African American, whoseunwitting contribution (i.e., HeLa cell line) to the ethically questionable success of micro-biologic research. More importantly, this chapter raises many provocative questions aboutthe use of the race concept, sets an agenda reflecting the African American Manifesto onGenomic Studies, and challenges both social and basic scientists to accept the universality ofgenetic research. Marks extends this critique in his chapter on “Scientific and Folk Ideasabout Heredity” with some rather illustrative examples of the uniqueness of sameness and theresponsibilities of geneticists to make sure that the public and (especially the media)understand the “differences between scientific heredity and folk ideas on heredity”. Thedanger is that history will repeat itself and a more sophisticated, resolute, and powerfulversion of the erstwhile eugenics movement will emerge based on the new discoveries of theHuman Genome Project.

In addressing the limitations and potential misuses of genetic research, we must also notforget the promise of the Human Genome Project. The chapter on “The Genetics of HumanBehavior: Lessons from the Human Genome Project” by Jonathan Beckwith challenges usto consider the potential benefits of The Human Genome Project. Genetic testing, screening,and therapy are not intrinsically morally repugnant. What matters most is the societalcontext. That is whether the decision is an individual one as in the case of genetic screening(e.g., availability of amniocentesis for a 40 year old pregnant woman whose chances ofhaving a baby born with Down’s syndrome is about 1 out of 100) or a state mandated andenforced decision to screen and abort on the basis of social desirability or sanctions (e.g.,Chinese state medical practices).

The debate about genetics and race owes a tremendous debt to sociologists (and othersocial scientists). We more than any other discipline have courageously forced (by way ofpushing and pulling) the basic sciences, medicine, public health, the National Institutes ofHealth and other policy and professional organizations to address the proposition that “race”is first, foremost, and only a social conception. It is especially gratifying to read the work ofeminent population geneticists such as Cavalli-Sforza quoting historical treatises and con-temporary studies by sociologists on the futility of genetic conceptions of race differences.However, the biological and medical sciences are replete with characterizations of “racedifferences” and suggestions of “reduced biologic viability”. With the advent of the scientificrevolution propelled by the advances of the Human Genome Project, the possibility existsthat more rather than fewer such inferences will be presented.

Thus this century offers the same opportunities for us to contribute to another social andscientific revolution. There is a tremendous amount of work to be done and the journey hasjust begun. There are also challenges that we must face as a discipline especially in leadingthe scientific community, the media, and the public in questions about race. If we are tocontinue to make a lasting contribution we must embrace this new science and retoolourselves. Learning, engaging, and working with sensible basic scientists and geneticists toensure that the ethical, social and political implications of The Human Genome project are

194 Book Reviews / Race & Society 3 (2000) 193–195

Page 3: The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas: Edited by Raymond A. Zilinskas and Peter J. Balint Praeger Press. Westport, CT 2001. Pp

critically and justly addressed is crucial. The work edited by Zilinskas and Balint is a highlyvaluable contribution in pursuit of these goals.

Gary KingDepartment of Biobehavioral Health

Pennsylvania State UniversityUniversity Park, PA 16802

195Book Reviews / Race & Society 3 (2000) 193–195