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Syllabus contents:

Course Description

Grading Policy

Required Readings

Class Participation

Outline and Readings

 

Genetics and the Law

PHG 523/LAW E564 (2 Credits)

Winter, 2004

Instructor                                                                      Teaching Assistant:

Professor Patricia C. Kuszler, MD, JD                          Josh Carlson, MPH (candidate)

Gates Hall 374                                                             Health Sciences F363

Phone: 206/685-0511                                                  Phone:  206/310-0268

E-mail: kuszler@u.washington.edu                                E-mail: carlsojj@u.washington.edu

Office Hours:    Contact Jennifer Snider for                    Office Hours:  By Appointment       Appointment (jsnider@u.washington.edu)

Course Description

This class extends the discussion of issues originating in PHG 512 (Legal, Ethical and Social Issues in Public Health Genetics) by examining in greater depth the legal consequences of genetic technologies and information.  It will begin with an overview of genetic science, the recent explosion of knowledge about the genome, and the products and services flowing from advances in genetics.  The course will first consider genetics research and some of the policy challenges it has presented.   It will then move on to look at the movement from bench to marketplace, including patenting, technology transfer, and conflicts of interest.  The course will then consider the use, abuse and medical mistakes in genetic testing and information, focusing on reproductive decision-making, parenting, and domestic relations.  The course will then turn to liability issues, including breach of confidentiality, insurance access and coverage disputes, and employment discrimination.  The course will finish with an exploration of the use of DNA in the courtroom, forensics, behavioral genetics, and use of genetic evidence in the civil and criminal context.  The overarching context for the course will be on what the response of the law and legal system to advances in genetic information and technologies has been heretofore and should be in the future.

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Grading Policy

Your course grade will be based on an examination (50%), a short 5-10 page paper (40%), and class participation (10%).

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Required Readings

The required text is Lori B Andrews, Maxwell J. Mehlman, Mark.A. Rothstein, Genetics: Ethics, Law and Policy (West,  2002)[hereinafter Text]; the text is available at University Bookstore. In addition, there are a few articles and recent cases that will be handed out as supplementary materials during the course.  

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Class participation

 

This course is designed to engender active discussion of the issues.  I will be distributing weekly study questions to assist you in focusing your reading for each class session.  An essential component of this course will be your active and voluntary participation in class discussion.  The expectation is that you will have read the assigned readings, considered the study questions, and fully engage in the discussion. 

 

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Course Outline and Readings

The following syllabus outlines the course, reading assignments and sets forth a preliminary timetable.  It is possible that the timetable and reading assignments will be amended during the course, depending on our pace and new developments in public health genetics.

January 6

 

I.                    Introduction

A. Genes and the Past

B.  Genes and the Future

C.  Genes and the Present

 

Reading Assignment:

            Text: Pages 2-14*

            John Avise, “The Genetics Gods: Evolution and Belief in Human Affairs”

Luigi Luca Cavalli-Sforza, “Remarks Upon Being Awarded the Balzan Prize for the Science of Human Origins”

Matt Ridely, “Genomes: The Autobiography of a Species in 23 Chapters”

Philip Kitcher, “The Lives to Come: The Genetic Revolution and Human Possibilities”

Mark A. Rothstein, “Genetics and the Work Force of the Next Hundred Years”

C.S. Lewis, “The Abolition of Man”

Francis S. Collins and Victor McKusick, “Implications of the Human Genome Project for Medical Science”

Neil A. Holtzman, “Putting the Search for Genes in Perspective”

Barbara Katz Rothman, “Genetics Maps and Human Imaginations”

*For non-scientists or those who did not take PHG 512, please read pages 15-40 as well.

 

January 13

 

II.         Genetics Research

A.  Regulation of Research

B.     Research on Previously-Collected Tissue Samples:  Right of the Source “Patient”

C.     The Human Genome Diversity Project

 

Reading Assignment

            Text: Pages 84-126

Henry T. Greely, The Control of Genetic Research; Involving the "Groups Between"

U.S. Dept. of Health and Human Services, Office of Protection From Research Risks, Protecting Human

Research Subjects: Institutional Review Board Guidebook

Zsolt Harsanyi & Richard Hutton, Genetic Prophecy: Beyond the Double Helix

American Society of Human Genetics, Statement on Informed Consent for Genetic Research

National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance

Zeshan Q. Khan, Colonialism Revisited: Insights into the Human Genome Diversity Project

Eric T. Juengst, The Perils of Genetic Genealogy

Morris W. Foster et al., A Model Agreement for Genetic Research in Socially Identifiable Populations

                       

January 20

 

III.               Commercialization of Genetic Research: Property, Patents and Conflicts of Interest

A.        Patenting of Genetic Materials

B.         Concerns About the Patenting of Genes

C.         Technology Transfer: Laws and Commercialization

D.         Patients: The Sources of Genes and Cell Lines

 

Reading Assignment

            Text: Pages 145-165; 169-180; 195-221

                        Lila Feisse & Brian Stanton, Are Biotechnology Patents Important

Matthew Erramouspe, Staking Patent Claims on the Human Blueprint: Rewards and Rent-Dissipating Races

                        Diamond v. Chakrabarty

                        Amgen Inc. v. Chugai Pharmaceutical Co., Ltd.

                        U.S, Department of Energy Office of Science, Office of Biological and Environmental

Rebecca Eisenberg, Reexamining the Role of Patents in Appropriating the Value of  DNA-Sequencing

Michael Heller & Rebecca Eisenberg, Can Patents Deter Innovation?—The Anticommons in Biomedical Research

Nicholas Thompson, Gene Blues: Is the Patent Office Prepared to Deal with the Genomic Revolution

Melissa L. Sturges, Who Should Hold Property Rights to the Human Genome? An Application of the Common Heritage of Humankind

ACMG Position Statement

ACP Advocacy on the Issues

James V. Lacy, et al., Technology Transfer Laws Governing Federally Funded research and Development

Sheldon Krimsky, The Profit of Scientific Discovery and Its Normative Implications

Lori Andrews & Dorothy Nelkin, Body Bazaar: The Market for Human Tissue in the Biotechnology Age.

Moore v. Regents of  the University of California

AMA Council on Ethical and Judicial Affairs, Code of Medical Ethics, Current Opinions with Annotations

HUGO Ethics Committee Statement on Benefit Sharing

 

January 27

 

IV.              Genetic Testing and Reproduction

A.     Regulation of Genetic Testing Products and Services

B.     Prenatal Screening

C.     Reproductive Technology and Genetics


Reading Assignment

            Text: Pages 222-280

Lori Andrews, “Assessing Genetic Risks: Implications for Health and Social Policy”

Lori B. Andrews, “Future Perfect: Confronting Decisions About Genetics”

Lori B. Andrews, “Torts and the Double Helix; Malpractice Liability for Failure to Warn of Genetic Risks”

Keel v. Banach
Munro v. Regents of the University of California

Curlender v. Bio-Science Laboratories

Doolan v. IVF America (MA)Inc

Lori B. Andrews, “Prenatal Screening and the Culture of Motherhood”

Mary Z. Pelias & Margaret M. DeAngelis, “The New Genetic Technologies: New Options, New Hope, and New Challenges”

Minimal Genetic Screening For Gamete Donors, Approved by the Board of Directors of the American Society for Reproductive Medicine

Johnson v. Superior Court of Los Angeles County

Harnicher v. University of Utah Medical Center

 

February 3 

 

IV.         Parentage and Family Laws

A.     Reassessing Traditional Presumptions of Paternity in the DNA Era

B.     Genetics and Switched Babies

C.     Paternity and Assisted Reproduction

D.     Genetics and Immigration

 

Reading Assignment

            Text: Pages 444-492

Michael H. v. Gerald D.

Richard Willing, “DNA and Daddy”

Lack v. Welch

Mays v. Twigg

Perry-Rogers v. Fasano

People v. Sorensen

Jhordan C. v. Mary K.

SODS v. Superior Court

In Re Marriage of Buzzanca

 

February 10

 

IV.         Parentage and Family Laws

E.      Genetics, Adoption, and Disability

F.      Unanticipated Misattributed Paternity

 

V.        Genetic Testing and Screening for Newborns, Children, and Adolescents

A.     Newborn Screening Programs

B.      Genetic Testing of Children and Adolescents

 

Reading Assignment

            Text: Pages 494-516; 343-347;299-333

Cesnik v. Edgewood Baptist Church

Meracle v. Children's Service Society of Wisconsin

Amanda Trefethen, “The Emerging Tort of Wrongful Adoption”

American Society of Human Genetics Social Issues Committee and American College of Medical Genetics Social, Ethical, and Legal Issues Committee, “Genetic Testing in Adoption”

In Re Marriage of Carney

Jean McEwen, “Genetic Information, Ethics, and Information Relating to Biological Parenthood”

            American Academy of Pediatrics, “Report of the Task Force on

            Newborn Screening”

            Ellen Wright Clayton, “Screening and Treatment of Newborns”

            Ruth R. Faden et al., “Parental Rights, Child Welfare, and

            Public Health: The Case of  PKU Screening”

            Norman Fost, “Genetic Diagnosis and Treatment: Ethical

            Considerations”

American Society of Human Genetics and American College

            of Medical Genetics, “Points to Consider: Ethical, Legal, and

            Psychosocial Implications of Genetic Testing in Children

            and Adolescents”

            Dorothy C. Wertz et al., “Genetic Testing for Children and

            Adolescents: Who Decides?”

Council on Ethical and Judicial Affairs, “American Medical

                        Association, Code of Medical Ethics: Current Opinion 2.138

 

February 17

 

V.                 Legal Liability and Genetic Information (to be continued on February 25)

A   Privacy and Confidentiality

B.     Third Party Liability:  Duty to Warn

 

 

Reading Assignment

            Text:  Pages 609-617; 623-627; 358-364; 637-655

Whalen v. Roe

George J. Annas, Leonard H. Glantz & Patricia A. Roche, “The Genetic Privacy Act and Commentary”

Philip R. Reilly, “The Impact of the Genetic Privacy Act on Medicine”

Wendy E. Parmet, “Legislating Privacy: The HIV Experience”

Health Insurance Portability and Accountability Act

James M. Humber, “Protecting the Privacy of Patients' Health Information: Summary of the Final Regulation, in Privacy and Health Care”

Pate v. Threlkel

Safer v. Pack

Mark A. Hall, “Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers' Use of Genetic Information”

Katskee v. Blue Cross/Blue Shield

            Supplementary Readings:

            Reisner v. University of California

 

 

February 24

 

VI.              Legal Liability and Genetic Information (Continued)

C.  Insurance

a.       Discrimination

b.      Access to Benefits

D.  Genetic Discrimination in Employment 

 

Reading Assignment

Text:   650-665; 667-672; 690-718           

Steven E. Zimmerman, “The Use of Genetic Tests by Life Insurance Companies: Does This Differ From the Use of Routine Medical Information?”            

Robert J. Pokorski, “Genetic Information and Life Insurance”

Cathleen D. Zick et al., “Genetic Testing, Adverse Selection, and the Demand for Life Insurance”

Chabner v. United of Omaha Life Insurance Co.

Paul Steven Miller, “Is There a Pink Slip in My Genes? Genetic Discrimination in the Workplace”

EEOC Compliance Manual

Sutton v. United Airlines

Laws v. Pact, Inc.

Americans with Disabilities Act

Norman-Bloodsaw v. Lawrence Berkeley Laboratory

Mark A. Rothstein, “Genetics and the Work Force of the Next Hundred Years  

 

March 2

 

XI.       Forensics: Genetic Testing for Identification

A. Admissibility of DNA Evidence in Criminal Cases

B. DNA Banks

C. DNA Identification Outside the Criminal Setting

 

Reading Assignment

            Text:  517-561

The National Commission on the Future of DNA Evidence, “The Future of Forensic DNA Testing: Predictions of the Research and Development Working Group”

National Research Council, “The Evaluation Of Forensic DNA Evidence”

Eric Lander, “DNA Fingerprinting: Science, Law and the Ultimate Identifier”

Lori Andrews & Dorothy Nelkin, “Body Bazaar: The Market for Human Tissue in the Biotechnology Age”

Edward Imwinkelried & D. H. Kaye, “DNA Typing: Emerging or Neglected Issues”

Jones v. Murray

Mark A. Rothstein & Sandra Camahan, “Legal and Policy Issues in Expanding the Scope of Law Enforcement DNA Data Banks”

Michelle Hibbert, “DNA Databanks: Law Enforcement's Greatest Surveillance Tool?”

Mayfield v. Dalton

 

March 9

 

XII.         Genetics in the Courtroom

A   Behavioral Genetics

B.  Criminal Law

C.     Tort Law and Civil Litigation

                       

Reading Assignment

            Text: Pages 564-592; 735-747

                        Mark A Rothstein, Behavioral Genetic Determinism: Its Effects on Culture and Law

                        Stephanie L. Sherman, et al., Behavioral Genetics ’97

Lori B. Andrews, Predicting and Punishing Criminal Acts: How the Criminal Justice System Might Use Behavioral Genetics

Millard v. Maryland

Stewart v. Gramley

Kansas v. Hendricks

Carlson v. Wackenhut Corp.

Bryson v. Pillsbury

Wintz v. Northrup Corp.

Mark A. Rothstein, Preventing Discovery of Plaintiff Genetic Profiles by Defendants Seeking to Limit Damages in Personal Injury Litigation

 

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 Last Updated:
01/07/2004