1. 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 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.htmlhttp://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 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/12513976http://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.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/10002328http://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 http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml#cases