Implications of Genetic Advancements: Overcoming the Dangers of Discrimination

1. Implications of Genetic Advancements: Overcoming the Dangers of Discrimination Shawn Stewart, RN, CCM July 25, 2008 Emerging Trends in Healthcare Technology Dr Donna W Bailey

2. Purpose • The purpose of this presentation is to give nurses a basic understanding of the unintended consequences society faces due to technological advancements in genetic testing.

3. The Human Genome Project (HGP) • An International Effort Completed in 2003 • Reference Sequencing Human Chromosomes • Rough Drafts – Research Continues • Entire Collection for Scientific Researchers: • http://www.genome.gov/

4. Potential Roots of Discrimination Related to Genetic Testing • Detection of Predisposition to Diseases • Predicting Future Illness • Detection of Gene Variants Associated With Specific Diseases • Prediction of Response to Treatment

5. If Genetic Indicators Are Present What Does That Mean? • Predisposition does not mean an individual will conclusively develop the disorder. • Many conditions can have highly improved outcomes with preventative measures and a healthy lifestyle. • Other diseases such as Huntington’s in not treatable at this time.

6. Creating Inequalities • Inheritable Genetic Modification • Pre-Implementation Genetic Diagnosis • Exacerbation of Current Human Inequalities and Discrimination • Transhumanists

7. Ethical, Legal and Social Implications (ELSI) Program • Commitment to Research Studying ELSI: • National Human Genome Research • Institute (NHGRI) • Department of Energy (DOE)

8. ELSI Focuses • Use and Interpretation of Genetics • Clinical Integration of Technologies • Issues Surrounding Genetic Research • Public & Professional Education

9. ELSI Concerns: Genetic Information Obtained from Testing: Interpretation Uses Dissemination

10. ELSI Priorities: • Informed Consent • Privacy • Discrimination • Employer • Insurance • Determinism

11. Genetic Information Nondiscrimination Act (GINA) 2008 • What is GINA? • When does it take effect: • Health Insurers, May 2009 • Employers, November 2009

12. What Does GINA Not Include? • Military Personnel • Life Insurance • Disability Insurance • Long-Term Care Insurance

13. Documented Cases of Discrimination • In 1998 a pregnant woman who had one child with cystic fibrosis was urged to have an amniocentesis done to assess for this condition in her unborn child. • She declined and was issued an ultimatum from her HMO. • Due to a massive campaign the HMO was forced to reverse this threat.

14. Burlington Northern Santa Fe Railroad • EEOC Filed Suit for Unlawful Secret Genetic Testing • Testing for a Rare Condition That Causes Carpal Tunnel • Additionally Testing for Diabetes and Alcoholism • BNSF Quickly Settled the Lawsuit in 2001

15. Discrimination Has Led To Fear • The hundreds of reported cases of discrimination due to genetic testing results has instilled fear in society. • Many do not wish to have genetic testing done due to these types of cases. • They fear loss of health insurance coverage or even employment based on the results.

16. Educational Efforts • Education & Community Involvement Branch • National DNA Day • Education Modules for Teachers • Family Demonstration Projects

17. Battles Yet To Be Addressed • Research Shows a Connection Between Genes and Behavior • Is the Connection a Pre-Disposition or Actual? • The Courts Must Scrutinize to Avoid Discrimination • One of Many Ethical Dilemmas the Courts Must Address

18. Data Protection • International Declaration on Human Genetic Data • Biomonitoring Data Collection • Identity Theft Protection Act • Coordinated Environmental Health Network Act

19. Ongoing Research • Gene Regulation • DNA Sequence Organization • Gene Number, Exact Locations, and Functions • Chromosomal Structure and Organization • Protein Interactions and Conservation • Predicted vs. Experimentally Determined Function

20. Recommended Actions • Future Developments • Strategies for Staying Informed • Suggested Avenues of Voicing Concerns

21. References Center for Genetics and Society. (n.d.). About a "post-human" future & human biotechnology. Retrieved July 13, 2008, from Center for Genetics and Society Web site: http://www.geneticsandsociety.org/article.php?list=type&type=50 Horn, D. (1998, January 19). Genetic discrimination: A primer. Retrieved July 15, 2008, from Council for Responsible Genetics Web site: http://www.gene-watch.org/programs/privacy/BerInterview.html Human Genome Project Information. (2008, May 14). Genetics in the courtroom. Retrieved July 13, 2008, from Human Genome Project Information Web site: http://www.ornl.gov/sci/techresources/Human_Genome/courts/courts.shtml

22. References National Human Genome Research Institute. (2008, June 13). Cases of genetic discrimination. Retrieved July 19, 2008, from National Human Genome Research Institute Web site: http://www.genome.gov/12513976 National Human Genome Research Institute. (n.d.). ELSI program fact sheet. Retrieved July 13, 2008, from http://www.genome.gov/10002329. National Human Genome Research Institute. (2008, June 19). Genetic information nondiscrimination act of 2008. Retrieved July 10, 2008, from National Human Genome Research Institute Web site: http://www.genome.gov/10002328 Oak Ridge National Laboratory. (n.d.). Genetics legislation. Retrieved July 12, 2008, from http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml#cases