shawn stewart, rn, ccm july 25, 2008 emerging trends in healthcare technology dr donna w bailey
TRANSCRIPT
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Shawn Stewart, RN, CCMJuly 25, 2008
Emerging Trends in Healthcare Technology
Dr Donna W Bailey
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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.
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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/
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Potential Roots of Discrimination Related to Genetic Testing
Detection of Predisposition to Diseases
Predicting Future IllnessDetection of Gene Variants Associated With Specific Diseases
Prediction of Response to Treatment
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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.
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Creating InequalitiesInheritable Genetic Modification
Pre-Implementation Genetic Diagnosis
Exacerbation of Current Human Inequalities and Discrimination
Transhumanists
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Ethical, Legal and Social Implications (ELSI) Program
Commitment to Research Studying ELSI:
•National Human Genome Research Institute (NHGRI)•Department of Energy (DOE)
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ELSI Focuses
•Use and Interpretation of Genetics•Clinical Integration of Technologies•Issues Surrounding Genetic Research•Public & Professional Education
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ELSI Concerns:
Genetic Information Obtained from Testing:
InterpretationUsesDissemination
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ELSI Priorities:
• Informed Consent• Privacy• Discrimination
EmployerInsurance
• Determinism
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Genetic Information Nondiscrimination Act (GINA) 2008
What is GINA?When does it take effect:
Health Insurers, May 2009Employers, November 2009
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What Does GINA Not Include?
Military PersonnelLife InsuranceDisability InsuranceLong-Term Care Insurance
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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.
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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
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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.
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Educational EffortsEducation & Community
Involvement Branch
National DNA Day
Education Modules for Teachers
Family Demonstration Projects
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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
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Data Protection
International Declaration on Human Genetic Data
Biomonitoring Data Collection
Identity Theft Protection Act
Coordinated Environmental Health Network Act
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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
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Recommended Actions
Future Developments
Strategies for Staying Informed
Suggested Avenues of Voicing Concerns
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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
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ReferencesNational 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