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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. Purpose

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Implications of genetic advancements overcoming the dangers of discrimination

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


Implications of genetic advancements overcoming the dangers of discrimination

  • 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.


Implications of genetic advancements overcoming the dangers of discrimination

  • 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/


Potential roots of discrimination related to genetic testing
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


If genetic indicators are present what does that mean
If Genetic Indicators Are Present What Does That Mean? Testing

  • 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.


Creating inequalities
Creating Inequalities Testing

  • Inheritable Genetic Modification

  • Pre-Implementation Genetic Diagnosis

  • Exacerbation of Current Human Inequalities and Discrimination

  • Transhumanists


Implications of genetic advancements overcoming the dangers of discrimination


Implications of genetic advancements overcoming the dangers of discrimination

  • ELSI Focuses Testing

  • Use and Interpretation of Genetics

  • Clinical Integration of Technologies

  • Issues Surrounding Genetic Research

  • Public & Professional Education


Implications of genetic advancements overcoming the dangers of discrimination

ELSI Concerns: Testing

Genetic Information Obtained from Testing:

Interpretation

Uses

Dissemination


Implications of genetic advancements overcoming the dangers of discrimination

  • ELSI Priorities: Testing

  • Informed Consent

  • Privacy

  • Discrimination

    • Employer

    • Insurance

  • Determinism


  • Genetic information nondiscrimination act gina 2008
    Genetic Information Nondiscrimination Act (GINA) 2008 Testing

    • What is GINA?

    • When does it take effect:

      • Health Insurers, May 2009

      • Employers, November 2009


    What does gina not include
    What Does GINA Not Include? Testing

    • Military Personnel

    • Life Insurance

    • Disability Insurance

    • Long-Term Care Insurance


    Documented cases of discrimination
    Documented Cases of Discrimination Testing

    • 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.


    Burlington northern santa fe railroad
    Burlington Northern Santa Fe Railroad Testing

    • 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


    Discrimination has led to fear
    Discrimination Has Led To Fear Testing

    • 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.


    Educational efforts
    Educational Efforts Testing

    • Education & Community Involvement Branch

    • National DNA Day

    • Education Modules for Teachers

    • Family Demonstration Projects


    Battles yet to be addressed
    Battles Yet To Be Addressed Testing

    • 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


    Data protection
    Data Protection Testing

    • International Declaration on Human Genetic Data

    • Biomonitoring Data Collection

    • Identity Theft Protection Act

    • Coordinated Environmental Health Network Act


    Implications of genetic advancements overcoming the dangers of discrimination

    • Ongoing Research Testing

    • Gene Regulation

    • DNA Sequence Organization

    • Gene Number, Exact Locations, and Functions

    • Chromosomal Structure and Organization

    • Protein Interactions and Conservation

    • Predicted vs. Experimentally Determined Function


    Recommended actions
    Recommended Actions Testing

    • Future Developments

    • Strategies for Staying Informed

    • Suggested Avenues of Voicing Concerns


    References
    References Testing

    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


    References1
    References Testing

    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