Genetic Discrimination

By: Thalia Escobedo

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.

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

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

CasesEMPLOYEMENT• Kim, a 24 yr. old woman was

fired from her job as a social worker because of her predisposition to Huntington’s disease

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.

HIPPA—Health Insurance Portability and Accountability Act of 1996

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

National Consumer Health Privacy Survey 2005.

• A telephone-based survey with approximately 2,100 individuals• U.S residents • Age 18+

GINA— Genetic Information Nondiscrimination Act of 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

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

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

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.

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.

• “Discrimination on the basis of genetic information is no less offensive than

discrimination based on race, gender, or sexual orientation”

Any Questions ?

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, the Genetics 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 Human Genome Research Institute, 16 Mar. 2012. Web. 6 Nov. 2015.

• Hoyweghen, Ine Van. 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