Quiz 2 practice Flashcards
path for how a bill becomes a law
Step 1: The bill is drafted
* Step 2: The bill is introduced in House or Senate
* Step 3: The bill goes to committee
* Step 4: The bill is referred for subcommittee review
* Step 5: Committee mark-up of the bill
* Step 6: Voting by the full Chamber on the bill
* Step 7: Referral of the bill to the other Chamber
* Step 8: The bill goes to the President
https://www.genome.gov/about-genomics/policy-issues/How-Bill-Becomes-Law
The Genetic Information and Non-Discrimination
Act (GINA)
- protects people from genetic discrimination in health insurance and employment
- was passed in 2008 (President George W. Bush)
- Prior, some states had passed laws addressing genetic discrimination
- provided uniform protections to most Americans
- defines genetic information as:
- Family medical history
*- Genetic diagnosis in a family member - Genetic tests of an individual or their family members (up to fourth-degree relatives)
- Participation of an individual or their family member(s) in research that includes genetic testing,
counseling, or education
what two things does GINA cover?
- Health Insurance
- Genetic information can’t be used to determine eligibility, or to set the health insurance
premium, contribution amounts, or terms of coverage - Health insurance companies cannot request or require individuals or their family members
to have a genetic test or provide genetic information - Cannot consider family history or a genetic test result as a pre-existing condition
- Employment
- Employers cannot use genetic information in any employment decisions or to limit,
segregate, classify or otherwise mistreat an employee - Employers or other covered entities cannot request or require individuals to provide
genetic information and/or genetic tests as a condition for employment
what limitations does GINA have
- Does not protect against discrimination from other types of insurances – life insurance,
disability insurance, long term care insurance, etc. - Only protects people who have not developed the disease/disease symptoms
- Does not protect individuals with the following types of insurance/care:
- Tricare
- Veterans who receive care through the Veterans Administration
- The Indian Health Service
- Federal Employees enrolled in the Federal Employee Health Benefits Plan
- Does not protect individuals working for companies with 15 or fewer employees
- Like any law, it can be changed or repealed
The Health Insurance Portability and Accountability
Act (HIPAA)
- was passed into law in 1996 (President Bill Clinton)
- Required the Department of Health and Human Services to adopt national standards
for electronic health care transactions - Incorporated provisions that mandated adoption of federal privacy protections for
individually identifiable health information (Privacy Rule) - The Privacy Rule compliance deadline was in 2003
- Who is covered by the Privacy Rule?
- Health plans, health care providers, health care clearinghouse, business associates
HIPAA: Elements of Protected Health Information
(PHI)
Names
* All geographic subdivisions smaller than state
* All elements of dates (except for year) for dates directly
related to an individual
* Telephone numbers
* Fax numbers
* Email addresses
* Social Security numbers
* Medical record numbers
* Health plan beneficiary numbers
* Account numbers
* Certificate/license numbers
* Vehicle identifiers
* Device identifiers and serial numbers
* URLs
* IP address numbers
* Biometric Identifiers
* Full face photographic images and any comparable
images
* Any other unique identifying number, characteristic or
code
Americans with Disabilities Act (ADA)
The Americans with Disabilities Act was passed in 1990 (President George H.W. Bush)
* Prohibits discrimination against individuals with disabilities in all areas of public life
* Five sections address different areas of public life:
* Employment
* Public Services – State and Local Government
* Public Accommodations and Services Operated by Private Entities
* Telecommunications
* Miscellaneous Provisions
* Disability is defined by the ADA as:
* A physical or mental impairment that substantially limits one or more major life activities
* A person who has a history or record of such an impairment
* A person who is regarded as having such an impairment whether or not the impairment limits or is perceived to limit a
major life activity
Genetic Privacy Laws
Many states have introduced or passed bills related to genetic privacy for Direct-
to-Consumer genetic testing
* Example of a model law used in multiple states
* Developed by the Coalition for Genetic Data Protection
* Has representatives from 2 DTC companies on the coalition
* Outlines rules for consumer consent, releasing data to law enforcement without
express consent, or to life, long-term care, or disability insurers
biomarker testing
- State bill that requires that insurance companies, including Medicaid, cover
comprehensive biomarker testing for patients with cancer and other conditions - PA was the 20th state to pass this bill
- Law doesn’t require coverage of screening tests that determine a person’s risk of
disease - Law ensures that standard of care is accessible to all – aims to increase health equity
genetic discrimination
South Dakota 2021: SB178
* Amends existing state law by adding life insurers and long term care insurers to
covered entities when referencing genetic discrimination
* Extends protections to Direct-to-Consumer companies – cannot share this
information without written consent from the customer
* New York 2021: S7430
* Prohibits denial of refugee resettlement based on any criterion, including
predisposing genetic characteristics
investigative genealogy
- Investigative genealogy is the use of genetic information from Direct-to-
Consumer genetic testing or third-party websites to identify potential suspects in
a case - Laws limiting use of investigative genealogy
- Maryland 2021: Limits the use of investigative genealogy initiation without having
information certified and the search authorized by the court. Limits the types of cases
this can be used for - Montana 2021: Restricted familial searches in government-maintained databases
and requires a warrant to search consumer DNA databases - 12 states expressly allow use of investigative genealogy
policy
Policy: A law, regulation, procedure, administrative action, incentive, or voluntary
practice of governments and other institutions (CDC)
“Public policy is whatever governments choose to do or not to do.” (Thomas Dye)
Health policy: decisions, plans, and actions that are undertaken to achieve specific
health care goals within a society (WHO)
who influences public policy?
Elected officials
Executive, legislative and judicial branch
Local, state, federal
Appointed officials and civil servants
Governance and advisory bodies
Interest groups, lobbyists and advocates
Media
Researchers and policy analysts
Courts
The public
cdc policy process
Problem Identification
Policy Analysis
Strategy and Policy Development
Policy Enforcement
Policy Implementation
Overarching Domains
Stakeholder Engagement & Ed
Evaluation
Examples of Public Health Genomics
Policy by Source
Laws, acts, statutes, ordinances and rules/regulations (local, state, and federal)
Legal decisions
National professional organizations
Advocacy groups
Accrediting organizations
Insurance companies
Individual and government organizations
Norms and expectations: “usual, customary and reasonable
