Genetics And The Law

Question 1

Genetic discrimination

Answer 1

Using genetic information to treat individuals differently or unfairly (example: denying privileges)

Question 2

Before GINA

Answer 2

Civil rights act of 1964 - may offer protection at workplace if an employer discriminated based on a genetic trait related to a particular ethnic group

Americans with disabilities act
1990 - prohibits discrimination against individuals with disabilities, including those associated with a genetic disorder. No protection against unexpressed genetic conditions. Employers may still request employees to provide medical or genetic info

Question 3

Before GINA 2

Answer 3

Health Insurance portability and accountability act (HIPAA) 1996 - prohibits use of health related information, including genetic factors by group health insurance plans to deny coverage or increase premiums

Limitations: does not prevent charging higher premiums for a whole group. Does not apply to those seeking insurance in the individual market. Does not prohibit employers from refusing to offer coverage

Executive order 2000 president Clinton. Prohibited workplace genetic discrimination in federal departments and agencies

State laws: varied widely about eligibility, risk classification based on genetic information, disclosure of information

Question 4

GINA

Answer 4

Took 13 years to get through legislature
2001, 2002

2007- GINA passed house
2008- GINA passed in the Senate
May 21,2008 - signed into law by George W Bush

Question 5

GINA

What is genetic information

Answer 5

Individuals or family’s genetic test (up to and including 4rth degree relatives)
Occurrence of disease in family members
Individual or family’s participation in genetic testing research, or in education or genetic counselling
Includes genotypes, polymorphisms, chromosomal changes, genetic characteristics of existing tumours

Question 6

GINA

What genetic information is NOT

Answer 6

Age
Gender
Blood counts
Liver function tests 
Cholesterol 
Infectious disease testing 
Tests of metabolites or proteins directly related to a disease

Question 7

GINA

Answer 7

Divided into title 1 and title 2

Title 1: health insurance

Title 2: employment

Question 8

Title 1

Answer 8

Took effect May 21, 2009
Insurer cannot require an individual to provide genetic information or information on a family member for: eligibility, coverage, premium-setting
Insurer cannot use Genetic information to make enrolment or coverage decisions
Cannot require person or family to have a genetic test
Cannot request or purchase genetic information.

Question 9

Title 1 Exceptions

Answer 9

group health plan engaged in research may request, but not require, a genetic test for specific research activities.
Military personnel, federal employees health benefits plan, individuals receiving care from veterans administration or Indian health service
Current health status
Does not offer protection against discrimination in life, disability, and long term care insurance
Coverage determinations: can require genetic information if it’s related to determine eligibility for coverage for screening or surgeries. Only minimum amount of information necessary for decision making, individual can pay out of pocket rather than provide the genetic information

Question 10

Title II

Answer 10

Provisions took effect Nov 21, 2009
Applies to local and state government and private employers with >15 employees, labour unions, employment agencies, labor management programs

Genetic information cannot be used for decisions regarding: hiring, firing, job assignments or promotions
Employers cannot: request, require, or purchase genetic information about a family member, fetus, or embryo

Question 11

Exemptions to Title II

Answer 11

Genetic information may be collected for: toxic monitoring programs, wellness programs
Unintended acquisition of information is not prohibited

Genetic information acquired in these ways still cannot be disclosed or used to make any employment decisions

GINA does not preempt more protective state laws, it is the minimum standard

Question 12

Enforcement

Answer 12

Enforced through the agencies whose laws were affected by its provisions

Title I: by US departments of labor, treasury, and health and human services

Title II: enforced by the equal employment opportunity commission
Civil fines of 100$ per violation, criminal fines up to 250 000$ with 10 years prison for violations of a commercial and malicious nature, individuals can pursue private litigation

Has not been tested much at this point