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Genes And Human Self-Knowledge
Reflections On Modern Genetics
Robert F. Weir
University of Iowa Press, 1994

Contemporary developments in human genetics are profoundly meaningful, both for the rapidity of scientific discoveries and for their personal and social implications. The Human Genome Project, a worldwide effort to map the 50,000 to 100,000 genes making up the human blueprint, is creating new ways of understanding ourselves as individuals, as parents, as members of a family, an ethnic group, a species. Almost every day yet another medical detective finds a genetic clue to the long-running mystery of human identity.

In 1992, the University of Iowa Humanities Symposium provided a public forum to examine the issues—moral, conceptual, legal, and practical—in modern genetics that are crucial to all of us. This strong, challenging volume is a collection of the major essays presented by historians, philosophers, and other academic humanists to a multidisciplinary audience of molecular and clinical geneticists, genetic counselors, humanists, and members of the public. The essays explore the historical background, philosophical implications, and ethical issues related to the Human Genome Project as well as other developments in modern genetics.

The questions raised in these essays are dramatic and troubling. What kind of knowledge is being produced by molecular geneticists? Do individual human genomes differ significantly from each other? How much do females and males differ from each other at the molecular level? Is there any genetic basis for distinguishing among racial or ethical groups? Can current practices in genetics counseling be compared to the earlier eugenics movement? Will current research lead to updated views on genetic “normalcy” or even “superiority”?

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front cover of Privacy and the Past
Privacy and the Past
Research, Law, Archives, Ethics
Lawrence, Susan C
Rutgers University Press, 2016
When the new HIPAA privacy rules regarding the release of health information took effect, medical historians suddenly faced a raft of new ethical and legal challenges—even in cases where their subjects had died years, or even a century, earlier. In Privacy and the Past, medical historian Susan C. Lawrence explores the impact of these new privacy rules, offering insight into what historians should do when they research, write about, and name real people in their work.
 
Lawrence offers a wide-ranging and informative discussion of the many issues involved. She highlights the key points in research ethics that can affect historians, including their ethical obligations to their research subjects, both living and dead, and she reviews the range of federal laws that protect various kinds of information. The book discusses how the courts have dealt with privacy in contexts relevant to historians, including a case in which a historian was actually sued for a privacy violation. Lawrence also questions who gets to decide what is revealed and what is kept hidden in decades-old records, and she examines the privacy issues that archivists consider when acquiring records and allowing researchers to use them. She looks at how demands to maintain individual privacy both protect and erase the identities of people whose stories make up the historical record, discussing decisions that historians have made to conceal identities that they believed needed to be protected. Finally, she encourages historians to vigorously resist any expansion of regulatory language that extends privacy protections to the dead.
 
Engagingly written and powerfully argued, Privacy and the Past is an important first step in preventing privacy regulations from affecting the historical record and the ways that historians write history.
 
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