Publications

Books (Non-fiction)

Allen Buchanan, Dan W. Brock, Norman Daniels, and Daniel Wikler
From Chance to Choice: Genetics and Justice
Cambridge University Press: New York 2000
In this treatise, four philosophy professors consider eugenic theory and the implications of fairness, justice, and equality arising from the development of genetic intervention technology. The authors stress that social practice of genetic techniques must be guided by ethics, arguing that the increase in genetic choices will cause society to redefine the meanings of health and disease.

Maxwell J. Mehlman
Wondergenes: Genetic Enhancement and the Future of Society
Indiana University Press: Bloomington, IN 2003
Mehlman explores the possible benefits and harms of genetic enhancement while emphasizing the difficulty in discerning between enhancement and therapy. Although instituting a ban on genetic enhancements would present practical challenges, he suggests some regulation is necessary to prevent inequalities in access from creating a “genobility,” resulting in social unrest and upsetting democracy.

Articles

Technology and Impact

Mark A. Hall
Genetic Discrimination Risks
available at: http://www.ncgbc.org/pdffiles/testfacts.pdf,
last visited June 16, 2004
The definition of genetic discrimination, reasons why an insurer would want to discriminate, how often discrimination occurs, and how to reduce the risk of discrimination are given. The author notes that there is greater incentive to discriminate for life and disability insurance because of long-term coverage and that approximately eighty percent of individuals in the United States with public or private health insurance have minimal risk of genetic discrimination because insurers of large groups cannot gather detailed medical information from individuals.

Social and Policy Implications

Lori B. Andrews
A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models
79 Wash. U. L.Q. 221-285 (2001)
Three potential legal models for serving as the framework for drafting genetic policy are discussed: the medical model, the public health model, and the fundamental rights model. The author suggests that the fundamental rights model will best protect an individual from involuntary genetic testing, assure the quality of test results, and control the dissemination of an individual’s genetic information to prevent discrimination by insurers and employers.

George J. Annas
Genetic Privacy: There Ought to be a Law
4 Tex. Rev. Law & Pol. 9-15 (1999)
The issue considered is whether genetic information warrants special treatment different from the present procedures applied to other very sensitive medical information. The author concludes that genetic information should receive unique treatment because of the key issues of genetic privacy: the information is like a “future diary” of our probabilistic health; it provides genetic information about relatives; and it is used to make important personal decisions.

Robert A. Bohrer
A Rawlsian Approach to Solving the Problem of Genetic Discrimination in Toxic Workplaces
39 San Diego L. Rev. 747-767 (2002)
The question of whether or not to allow employers to genetically screen and exclude individuals who have increased susceptibility to workplace toxins is analyzed under John Rawl’s notions of justice. The author offers that exclusion is justifiable under a Rawlsian approach if the employer compensates the excluded individuals by contributing to a fund under a “pay-to-exclude” system.

Richard A. Epstein
The Legal Regulation of Genetic Discrimination: Old Responses to New Technology
74 B.U. L. Rev. 1-23 (1994)
Regulation of disclosure of an individual’s genetic defects to prevent genetic discrimination is examined under the Americans with Disabilities Act. The author notes that non-disclosure of genetic defects to employers and insurers amounts to fraud and finds that genetic testing and exclusion is rational to avoid the increased cost of employing or insuring the protected class member.

Jill Gaulding
Race, Sex, and Genetic Discrimination in Insurance: What’s Fair?
80 Cornell L. Rev. 1646-1694 (1995)
In insurance, sex discrimination is generally allowed while race and genetic discrimination are not. Although genetic discrimination in insurance may be considered fair under negative rights theory because genes as a classifier accurately correlate with health risks, the author proffers that banning genetic discrimination is insufficient under positive rights theory because everyone should have access to insurance.

Kathy L. Hudson, Karen H. Rothenberg, Lori B. Andrews, Mary Jo Ellis Kahn, and Francis S. Collins
Genetic Discrimination and Health Insurance: An Urgent Need for Reform
270 Science 391-93 (1995)
The National Institutes of Health - Department of Energy Working Group on Ethical, Legal, and Social Implications of the Human Genome Project and the National Action Plan on Breast Cancer have together generated recommendations for state and federal policy-makers aimed at minimizing the potential for genetic discrimination. They recommend prohibiting insurers from requesting genetic information, revealing genetic information without the individual’s consent, and using genetic information to charge higher rates or to deny or limit coverage.

Mark A. Rothstein
Genetic Privacy and Confidentiality: Why They Are So Hard to Protect?
26 J. L. Med. & Ethics 198-203 (1998)
Genetic privacy and confidentiality are considered in the areas of insurance and employment. The author believes that requiring consent and regulating disclosure are insufficient to protect genetic information, emphasizing that the fundamental problems of access to health care and information disclosure of the present system need to be addressed.

Mark A. Rothstein and Mary R. Anderlik
What is Genetic Discrimination, and When and How Can It Be Prevented?
3 Genetics in Medicine 354-358 (2001)
Discrimination can be classified by social acceptability and rationality. Although genetic discrimination may be considered rational because it predicts risks based on actuarial principles, most people find it socially unacceptable because it results in negative treatment based on an asymptomatic individual’s genetic traits.

Anita Silvers and Michael A. Stein
An Equality Paradigm for Preventing Genetic Discrimination
55 Vand. L. Rev. 1341-1395 (2002)
The Americans with Disabilities Act and genetic discrimination laws do not protect presymptomatic individuals who might be able to mitigate the onset of genetic disease. To safeguard this excluded class, the authors argue for protection against genetic discrimination based on equality similar to the present protection against race and sex discrimination.

Louise M. Slaughter
Too Much Information: Fighting against Genetic Discrimination
73 Journal of AHIMA 25-29 (2002)
available at: http://library.ahima.org/xpedio/groups/public/documents/ ahima/pub_bok1_012245.html last visited June 16, 2004
The Genetic Nondiscrimination in Health Insurance and Employment Act proposed in the United States House of Representatives is discussed. The author lists reasons why genetic discrimination in health insurance and employment should be prohibited, including the fact that a gene mutation does not automatically mean the individual will become ill and the influence that fear of discrimination is having on genetic research and health care decisions.

Sonia M. Suter
The Allure and Peril of Genetics Exceptionalism: Do We Need Special Genetics Legislation?
79 Wash. U. L.Q. 669-748 (2001)
Genetics exceptionalism is the notion that genetic information introduces distinct social concerns because it qualitatively differs from other medical information. The author asserts that this notion is false and that regulation should focus on protecting all medical information to assure that those who suffer non-genetic risks are also protected from disparate treatment.

Reports

The Working Group on Genetic Engineering of the Justice, Peace and Creation Team
Science, Faith, & New Technologies: Transforming Lives, Volume II Genetics, Agriculture and Human Life
This document, produced jointly by the World Council of Churches and World Association for Christian Communication, discusses the interface of genetic engineering and human life, including biotechnology in agriculture. Theological response, ethical critique, and policy recommendations are given.