This powerpoint was part of the oral/visual component of the Advocacy Proposal, which was an important component, as it allowed me to talk about the social of genetic discrimination to my peers and propose my solution: The California Genetic Nondiscrimination Act of 2011.
2. What is Genetic Discrimination?
Genetic discrimination:
• Occurs when people are treated differently because they
have or are perceived to have a gene mutation that causes or
increases the risk of an inherited disorder.
3. Background
• Knowledge of the human genome, and
availability of genetic testing at a low cost, has
made genetic testing more popular.
• Results provide the patient with
• An idea of their prognosis
• Enable doctors to be more specific in terms of the
information they can give
• Allows treatment planning at an early stage
4. Why is this social issue important?
• Individuals should not be punished for something they can’t
control
• It can affect anyone
• A study analyzed the DNA of 179 people
• Estimates that ranged from just a handful up to 100 or more serious
disease-associated mutations
5. Cases
EMPLOYEMENT
• Kim, a 24 yr. old woman was fired
from her job as a social worker
because of her predisposition to
Huntington’s disease
6. Cases
• Jacob, a little boy who carries a gene for a
disorder called Long QT Syndrome was
denied coverage under his father's health
insurance policy because of his pre-
existing condition.
7. HIPPA—HealthInsurancePortabilityand
AccountabilityActof1996
Prohibits
• Prohibits a group plan from using
genetic information for rules of
continued eligibility
Limitations
• Does not prohibit a group health plan from
requesting or requiring genetic tests
• Do not require authorization before
disclosing genetic information
• Does not prevent from excluding coverage
for a particular condition
8. National Consumer Health Privacy Survey
2005.
• A telephone-based survey with
approximately 2,100 individuals
• U.S residents
• Age 18+
9. GINA—GeneticInformationNondiscriminationActof
2008
Protections
• Health insurers/employers cannot
request, require, or use genetic
information to make decisions about:
• Eligibility and premiums
• hiring, promotion, or pay
Limitations
• Does not protect those with life, disability, or
long-term care insurance
• Only covers 15+ employees
• Does not cover an individual’s manifested
disease or current condition
10. The California Genetic Information
Nondiscrimination Act of 2011
• CalGINA Protects all types of health insurances
• Expands protections to individual’s with a manifested disease
• Medical records are separated from private genetic information
• Consent forms are required to release information
11. Solution
• If a violation occurs:
• The employee may recover unlimited monetary damages
• Emotional distress damages, punitive damages, and attorneys’ fees and costs
• Creates awareness by:
• Require public schools to have access to additional resources to include programs
designed to prevent hate violence
12. Solution
• CalGINA extends non-discrimination
protection to additional areas, including:
• Medical services and care
• Housing
• Business establishments
• Financial assistance
• Participation of any state-funded programs.
13. Objections
• Insurance companies feel that by not having access to genetic
information, they increase their risk of having to pay higher premiums
for the individual with the predisposition
• Employers do not want to be liable for employees.
• Prefer hiring a healthy employee
• They feel that they are the ones who are at lost, and gain no benefit
from the laws.
14. •“Discrimination on the basis of genetic information is no
less offensive than discrimination based on race, gender,
or sexual orientation”
16. References
• http://ezratequotes.com/wp-content/uploads/2013/02/Health-Insurance-Denied.jpg
• http://www.geneticalliance.org/advocacy/policyissues/geneticdiscrimination
• Stein, Robert. "Perfection Is Skin Deep: Everyone Has Flawed Genes." NPR. NPR, 6 Dec. 2012.Web. 9 Oct.
2015.
• Forrester Research, Inc. "National Consumer Health Privacy Survey 2005."California Healthcare Foundation.
N.p., 2005.Web. 31 Oct. 2015.
• "Genetic Information Nondiscrimination Act." Gina Help. Genetic Alliance, theGenetics and Public Policy
Center at John Hopkins University, and the National Coalition for Health Professional Education in Genetics,
2010.Web. 1 Nov. 2015.
• "Genetic Information Nondiscrimination Act of 2008." National HumanGenome Research Institute, 16 Mar.
2012.Web. 6 Nov. 2015.
• Hoyweghen, IneVan. Risks in the Making:Travels in Life Insurance and Genetics. Amsterdam:Amsterdam UP,
2007. Print.
• Jones, Nancy Lee., and Alison M. Smith.Genetic Information: Legal and Law Enforcement Issues. Hauppauge,
NY: Novinka, 2005. Print
• Morris, Duane. "New California Law Prohibits Genetic Discrimination and Can Result in Significant Damages If
Violated." Duane Morris LLP &Affiliates, 23 Sept. 2011.Web. 3 Nov. 2015
Notes de l'éditeur
LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy
Only focuses on limiting genetic discrimination in the context of health insurance
An overwhelmingly amount still believed that their personal medical records where not being protected effectively
The Health Insurance Portability and Accountability Act did not ease their concern in regards towards health insurances keeping their medical information private.
Such federal overall have a limited coverage, and do not provide strict enforcement
back pay
future lost earnings; emotional distress damages; punitive damages; and attorneys' fees and costs, including expert witness fees
Consumers who choose not to disclose their genetic information do this to cheat their way into being covered, while paying the same amount as their “healthy” counterparts
