Genetic Privacy:
Legal and Ethical Frameworks

A. Bombard, MD, Medical Director, West Region-Women’s Health, AETNA, Inc.; Clinical Professor, Department of Obstetrics and Gynecology and Women’s Health, Albert Einstein College of Medicine

A.G. Breitenstein, JD, Chair, Medical Privacy Working Group, Massachusetts State Legislature; Former Director, Health Law Institute, Boston, MA.

Charles A. Welch, MD, Massachusetts Medical Society, Waltham, MA

Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine, University of Louisville School of Medicine

Jonathan Zittrain, Jack N. and Lillian R. Berkman Assistant Professor of Entrepreneurial Legal Studies, Harvard Law School; Faculty Co-Director, Berkman Center for Internet & Society

The availability of testing to determine an individual's genetic information predictably raises legal and ethical concerns about the appropriate contexts for testing and the appropriate applications of genetic information. This panel will examine the extent of privacy-related concerns, the use of genetic information in health insurance, and finally the general overarching question of whether genetic information is sufficiently distinct from other types of medical information to warrant different legal and ethical rules and norms.

In preparation for the Policy Roundtable:

A Glossary of Insurance Terms—provided by Allan Bombard, MD, of AETNA US Healthcare.
Dr. Bombard’s Power-Point Presentation
Prior Authorization Request Form for Breast and Ovarian Cancer Screening by Molecular Testing—AETNA US Healthcare

AG. Breitenstein's Power-Point Presentation

 

Relevant Articles

Christopher M. Keefer , BRIDGING THE GAP BETWEEN LIFE INSURER AND CONSUMER IN THE GENETIC TESTING ERA: THE RF PROPOSAL 74 Ind. L.J. 1375 : This article explores some of the public health concerns surrounding the use of genetic information in insurance and builds upon an existing literature to suggest a federal level response. This response would assign "risk factor" to each discovered genetic condition that would be used in an insurer's assessment of risk to ensure fairness in the process both to consumers and insurers.

Warren R. Webster, Jr. , Note,DNA DATABASE STATUTES & PRIVACY IN THE INFORMATION AGE , 10 Health Matrix 119: This article contains an informative overview of genetic fingerprinting both at the state and federal level, and explores some of the benefits and risks of a vast database of genetic information.

Lawrence O. Gostin, James G. Hodge, Jr. GENETIC PRIVACY AND THE LAW: AN END TO GENETICS EXCEPTIONALISM ,40 Jurimetrics J. 21: This article considers and rejcts "genetics exceptionalism" the theoretical framework that considers and treats genetic information different from other types of medical information. The authors argue that rules must be developed to protect the use of all types of medical information -- genetic and non-genetic.

James G. Hodge, Jr.NATIONAL HEALTH INFORMATION PRIVACY AND NEW FEDERALISM, 14 Notre Dame J.L. Ethics & Pub. Pol'y 791: This article reviews the various state responses to genetic privacy concerns and then explores the desirability and feasibility of a federal level standard. The article concludes that while national uniformity is preferable, federalism-related concerns make such a response unlikely.

Mark Hall, 40 Jurimetrics J. 93 LEGAL RULES AND INDUSTRY NORMS: THE IMPACT OF LAWS RESTRICTING HEALTH INSURERS' USE OF GENETIC INFORMATION: This article contains and invaluable and rare empirical review of the extent to which insurers use genetic information in making coverage decisions. The article concludes that insurers are disinterested in or reluctant to use genetic information in making enrollment decisions for a variety of reasons, and that insurers are responsive to the norms articulated in the few laws in force that curtail the use of genetic information in insurance.

Relevant Links

American Society of Law, Medicine & Ethics- an interdisciplinary organization dedicated to health policy issues.

Massachusetts Bar Association.

A fact sheet about genetic testing in employment sectors.

Information about genetic discrimination from the Council on Responsible Genetics

Information published by the American Medical Association about genetic discrimination.

When and Where:

27 February 2001, Austin East, 1515 Mass Ave, 6:30-8pm, Harvard Law School

Click here for a map. 

Please RSVP to this event.

Directions:

BY CAR:
From the Massachusetts Turnpike (I-90) Take exit 18, marked Cambridge/Allston. Follow the Cambridge signs off the ramp to the traffic lights. Stay in the middle lane while crossing the bridge. Proceed straight across the bridge onto River Street. Stay in the left lane and follow River Street into Central Square, the first major traffic intersection. Travel straight across the intersection. (Here the street becomes Prospect Street.) At the second traffic light, turn left onto Broadway. Follow Broadway until you must bear right at the fire station, onto Quincy Street. Move into the left lane and turn left at the light onto Cambridge Street. Proceed down through the underpass and move into the far right lane which feeds into Massachusetts Avenue. The Law School is on the right, approximately one block further. There are parking meters along both sides of the street.

From I-93
Take exit 26 for Storrow Drive. Keep left on exit ramp. Follow signs for Storrow Drive/Back Bay, bearing left. Take left lane exit for Government Center/Kendall Square/3 North and bear right at sign for Kendall Square. Proceed across bridge onto Broadway. Follow Broadway for two miles until you must bear right at the fire station, onto Quincy Street. Move into the left lane and turn left at the light onto Cambridge Street. Proceed down through the underpass and move into the far right lane which feeds into Massachusetts Avenue. The Law School is on the right, approximately one block further. There are parking meters along both sides of the street.

From Route 128 (I-95)
Take the exit for Route 2 East to Arlington and Boston. Travel approximately 6.5 miles, approach rotary from left lane. Bear left, following signs for 3 North and 16 East to Medford. At first light, turn right onto Massachusetts Avenue. Proceed 1.8 miles to Everett Street on the left (15th traffic light). The Law School begins here, on the left. There are parking meters along both sides of the street. BY T Take the redline to the Harvard Square stop. Come out of the T station and walk north on Massachusetts Avenue (the undergraduate campus will be on your right). Walk up mass Ave until you see a white colonial house on the right-hand side of Mass Ave. (the beginning of the law school campus). Cross Mass Ave and cut onto campus. There will be a historic-looking red stone building. That is Austin. Austin East is a large room on the first floor.

 

  Links to Other Policy Roundtable
Series Discussions:

Case Study

Download our poster

Consequences of the Human Genome Project for Medicine and Society
20 February 2001

Genetic Privacy: Legal and Ethical Frameworks
27 February 2001

Commercializing the Human Genome: Making Money and Changing the Scientific Enterprise.
5 April 2001

Translating Genomics into Better Medicine
10 April 2001


Are Human Beings Born or Made? Screening of the movie GATTACA
11 April 2001

Read All About It! The Translation of Science into Public Knowledge: Media Coverage of the Human Genome Project
12 April 2001

Finding God in the Genome: How Religion Informs the Applications of the Human Genome Project
19 April 2001


about this site
© Copyright 2001, Harvard Health Caucus at the Harvard Medical School