Shawn Stewart, RN, CCMJuly 25, 2008

Emerging Trends in Healthcare Technology

Dr Donna W Bailey

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.

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

Detection of Predisposition to Diseases

Predicting Future IllnessDetection of Gene Variants Associated With Specific Diseases

Prediction of Response to Treatment

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.

Creating InequalitiesInheritable Genetic Modification

Pre-Implementation Genetic Diagnosis

Exacerbation of Current Human Inequalities and Discrimination

Transhumanists

Ethical, Legal and Social Implications (ELSI) Program

Commitment to Research Studying ELSI:

•National Human Genome Research Institute (NHGRI)•Department of Energy (DOE)

ELSI Focuses

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

ELSI Concerns:

Genetic Information Obtained from Testing:

InterpretationUsesDissemination

ELSI Priorities:

• Informed Consent• Privacy• Discrimination

EmployerInsurance

• Determinism

Genetic Information Nondiscrimination Act (GINA) 2008

What is GINA?When does it take effect:

Health Insurers, May 2009Employers, November 2009

What Does GINA Not Include?

Military PersonnelLife InsuranceDisability InsuranceLong-Term Care Insurance

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.

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

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.

Educational EffortsEducation & Community

Involvement Branch

National DNA Day

Education Modules for Teachers

Family Demonstration Projects

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

Data Protection

International Declaration on Human Genetic Data

Biomonitoring Data Collection

Identity Theft Protection Act

Coordinated Environmental Health Network Act

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

Recommended Actions

Future Developments

Strategies for Staying Informed

Suggested Avenues of Voicing Concerns

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

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