Bill Overview
Title: Genetic Sequencing Accountability Act
Description: This bill requires the Government Accountability Office to report on national security and related risks of human genomic sequencing services or genetic services that are funded by the Department of Health and Human Services and carried out by certain foreign entities. In particular, the report must focus on entities that receive such funding and are organized under the laws of a country or countries of concern, as determined by the Office of the Director of National Intelligence or other federal departments.
Sponsors: Rep. Bucshon, Larry [R-IN-8]
Target Audience
Population: Individuals who undergo human genomic sequencing services funded by HHS
Estimated Size: 500000
- The legislation targets human genomic sequencing services, which predominantly involves individuals who undergo genetic testing or sequencing.
- This includes patients or participants who use genomic sequencing services funded by the Department of Health and Human Services (HHS).
- The focus on foreign entities in countries of concern suggests that individuals in the U.S. who have used genomic services by entities under scrutiny may be directly impacted.
- Researchers and medical professionals involved in human genomic sequencing services may be impacted due to potential changes in collaboration opportunities or data use.
- Security and privacy advocates, along with policymakers focused on biosecurity, would be involved or affected, given the bill's focus on national security risks associated with genomic data.
- Future patients who might need such services could see changes in the availability or regulation of these services if they are receiving HHS funding and are associated with foreign entities of concern.
Reasoning
- The policy impacts a segment of the population involved in human genomic sequencing services funded by HHS, focusing on privacy, security, and collaboration restrictions.
- The budget is limited, with significant implications primarily for those directly using or involved with HHS-funded services through foreign entities from countries of concern.
- Many researchers, patients, and data privacy advocates may be directly affected, while there will also be a portion of stakeholders in the general public who may express opinions about potential downstream effects.
- The Cantril wellbeing score changes most drastically for those directly relying on or interacting with affected entities, leading to varying impacts across stakeholders based on their proximity to the affected services.
Simulated Interviews
Biotech Research Scientist (San Francisco, CA)
Age: 35 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 6/20
Statement of Opinion:
- Concerns about potential restrictions on international collaboration.
- Possible increased paperwork and reporting standards.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 7 |
| Year 2 | 6 | 7 |
| Year 3 | 6 | 7 |
| Year 5 | 5 | 7 |
| Year 10 | 5 | 8 |
| Year 20 | 6 | 8 |
Genomic Data Analyst (Boston, MA)
Age: 28 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- Uncertainty regarding continued data access.
- Worries about workflow disruption and job security.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 6 |
| Year 2 | 4 | 6 |
| Year 3 | 4 | 7 |
| Year 5 | 5 | 7 |
| Year 10 | 6 | 8 |
| Year 20 | 7 | 8 |
Policy Advisor (New York, NY)
Age: 42 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 10.0 years
Commonness: 4/20
Statement of Opinion:
- Believes the policy enhances national security.
- Thinks the policy may raise public trust in genomic services.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Oncologist (Austin, TX)
Age: 50 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 3.0 years
Commonness: 7/20
Statement of Opinion:
- Concerned about delays in obtaining sequencing results.
- Worries about potential loss of collaboration with international labs.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 7 |
| Year 2 | 6 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 8 |
| Year 10 | 8 | 8 |
| Year 20 | 8 | 9 |
Patient Advocate (Seattle, WA)
Age: 60 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 6/20
Statement of Opinion:
- Worries about increased waiting periods for patients.
- Thinks it may lead to more stringent data protection, enhancing patient safety.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 6 | 7 |
| Year 3 | 6 | 7 |
| Year 5 | 6 | 8 |
| Year 10 | 7 | 8 |
| Year 20 | 8 | 8 |
Privacy Advocate (Los Angeles, CA)
Age: 38 | Gender: other
Wellbeing Before Policy: 9
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- Sees the policy as a crucial step towards stronger privacy protections.
- Believes it will lead to a safer environment for genetic data usage.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 9 | 9 |
| Year 2 | 9 | 9 |
| Year 3 | 9 | 9 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Genomic Sequencing Technician (Chicago, IL)
Age: 45 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 5.0 years
Commonness: 5/20
Statement of Opinion:
- Fears job complexity might increase due to new compliance requirements.
- Worries about the potential for reduced service efficiency.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 5 | 6 |
| Year 2 | 5 | 6 |
| Year 3 | 5 | 7 |
| Year 5 | 6 | 7 |
| Year 10 | 7 | 8 |
| Year 20 | 7 | 8 |
Graduate Student (Miami, FL)
Age: 30 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 6.0 years
Commonness: 4/20
Statement of Opinion:
- Worries about disruptions in accessing essential data for research.
- Concerns about the lengthening of research timelines.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 7 |
| Year 2 | 6 | 7 |
| Year 3 | 6 | 7 |
| Year 5 | 6 | 8 |
| Year 10 | 7 | 9 |
| Year 20 | 8 | 9 |
Government Health Official (Baltimore, MD)
Age: 55 | Gender: male
Wellbeing Before Policy: 8
Duration of Impact: 10.0 years
Commonness: 3/20
Statement of Opinion:
- Supports the policy for its potential to enhance oversight.
- Believes it will bolster public confidence in government-funded programs.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 8 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 9 | 8 |
Genetic Counselor (Denver, CO)
Age: 39 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 4.0 years
Commonness: 4/20
Statement of Opinion:
- Concerns about potential miscommunication with patients due to policy changes.
- Sees value in increased security and trust in the data handling.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 8 |
| Year 5 | 7 | 8 |
| Year 10 | 8 | 8 |
| Year 20 | 8 | 8 |
Cost Estimates
Year 1: $5000000 (Low: $3000000, High: $8000000)
Year 2: $5500000 (Low: $3500000, High: $8500000)
Year 3: $5750000 (Low: $3600000, High: $8750000)
Year 5: $6000000 (Low: $3750000, High: $9000000)
Year 10: $0 (Low: $0, High: $0)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- The act enhances oversight of genomic sequencing services involving foreign entities, prioritizing national security.
- It involves multiple federal agencies, increasing bureaucratic complexity and potential costs.
- Potential effects on the genomic sequencing industry include increased scrutiny and possible disruption of international collaborations.