Bill Overview
Title: Steven’s Law
Description: This bill establishes requirements for collecting and disclosing the medical history of reproductive tissue donors. Through regulations, the Department of Health and Human Services (HHS) must require reproductive tissue banks to collect, verify, and disclose certain information about a donor's medical history. As part of the regulations, HHS must (1) set out the medical information that a donor must disclose to a tissue bank, including familial medical conditions and the contact information of a medical professional who has examined the donor; and (2) require donors to waive privacy and other protections that limit disclosure of personal health information. A tissue bank must provide, at no cost, the donor's medical information to the recipient of the donor tissue, the recipient's physician, or a person conceived using the donor tissue (if that person is either 18 years of age or older or has the consent of a parent or guardian).
Sponsors: Rep. Jacobs, Chris [R-NY-27]
Target Audience
Population: People involved with reproductive tissue donation and use globally
Estimated Size: 12000000
- The bill focuses on reproductive tissue donors. This includes individuals who donate sperm, eggs, and other reproductive tissues.
- The bill affects medical professionals involved in examining donors as it requires the provision of contact information.
- Recipients of reproductive tissue, including individuals or couples who use donations for fertility treatments, are directly impacted as they will receive donor medical information.
- Individuals conceived from donated reproductive tissues are impacted, especially upon reaching age 18, as they can access donor medical information.
- Reproductive tissue banks are required to implement the new procedures and therefore are directly impacted.
Reasoning
- The policy primarily focuses on younger adults whether donors or individuals conceived from donations, due to its requirements regarding medical histories. Older adults who have completed families may be less impacted.
- Donors may be discouraged by privacy waivers, affecting the available donor pool and future recipients.
- The policy could potentially improve recipient decision-making with more informed choices based on available medical history, increasing satisfaction or reducing risks.
- The cost implications for tissue banks may drive increased operational complexity depending on the scale of donor management systems needed.
- Some recipients may experience improved outcomes in terms of health awareness, affecting long-term wellbeing.
Simulated Interviews
Software Engineer (San Francisco, CA)
Age: 28 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 4/20
Statement of Opinion:
- I feel uneasy about waiving my privacy rights, but I understand the need for recipients to have full medical history. It might deter me from continuing as a donor.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 7 |
| Year 2 | 6 | 7 |
| Year 3 | 5 | 7 |
| Year 5 | 5 | 7 |
| Year 10 | 5 | 7 |
| Year 20 | 5 | 7 |
Reproductive Specialist (Austin, TX)
Age: 35 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 10/20
Statement of Opinion:
- The policy will help us provide more tailored treatments, although the additional paperwork may complicate our processes.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 8 | 7 |
| Year 10 | 7 | 6 |
| Year 20 | 7 | 6 |
Lawyer (New York, NY)
Age: 38 | Gender: female
Wellbeing Before Policy: 9
Duration of Impact: 10.0 years
Commonness: 6/20
Statement of Opinion:
- Having donor medical information would have made our journey less anxious. I support the policy but worry about donor consent.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 9 | 9 |
| Year 2 | 9 | 9 |
| Year 3 | 9 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 8 | 7 |
College Student (Chicago, IL)
Age: 25 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 20.0 years
Commonness: 2/20
Statement of Opinion:
- I'm curious about my donor's medical history and this policy gives me that chance. But I worry about privacy concerns for donors.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 6 |
| Year 2 | 8 | 6 |
| Year 3 | 8 | 6 |
| Year 5 | 8 | 6 |
| Year 10 | 8 | 5 |
| Year 20 | 8 | 5 |
Manager in Healthcare Sector (Los Angeles, CA)
Age: 45 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 7.0 years
Commonness: 8/20
Statement of Opinion:
- This policy is necessary to ensure transparency but managing data privacy will be challenging and costly for institutions.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 7 | 7 |
| Year 20 | 6 | 6 |
Biotech Researcher (Seattle, WA)
Age: 32 | Gender: other
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 3/20
Statement of Opinion:
- The quality of donor information might improve research efforts, though might also reduce donor availability.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 7 | 8 |
| Year 5 | 7 | 8 |
| Year 10 | 7 | 8 |
| Year 20 | 7 | 8 |
Lab Technician (Columbus, OH)
Age: 29 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 10.0 years
Commonness: 5/20
Statement of Opinion:
- We need more secure systems to handle sensitive data, which means a lot of investment and training.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 6 | 6 |
| Year 20 | 6 | 6 |
Financial Advisor (Miami, FL)
Age: 46 | Gender: male
Wellbeing Before Policy: 8
Duration of Impact: 7.0 years
Commonness: 9/20
Statement of Opinion:
- For those invested in the sector, there might be costs involved, but overall societal benefit is a plus.
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 | 8 | 8 |
| Year 20 | 7 | 7 |
PhD Candidate (Denver, CO)
Age: 27 | Gender: other
Wellbeing Before Policy: 7
Duration of Impact: 6.0 years
Commonness: 5/20
Statement of Opinion:
- I'm in favor of full disclosure but concerned about ethical implications if donor pools shrink.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 6 | 7 |
| Year 10 | 6 | 7 |
| Year 20 | 6 | 7 |
Retired Nurse (Boston, MA)
Age: 52 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 7/20
Statement of Opinion:
- From experience, more medical information is helpful, but I feel for donor privacy.
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 | 7 | 8 |
| Year 10 | 7 | 7 |
| Year 20 | 7 | 7 |
Cost Estimates
Year 1: $75000000 (Low: $50000000, High: $100000000)
Year 2: $70000000 (Low: $45000000, High: $95000000)
Year 3: $75000000 (Low: $50000000, High: $100000000)
Year 5: $80000000 (Low: $55000000, High: $105000000)
Year 10: $85000000 (Low: $60000000, High: $110000000)
Year 100: $100000000 (Low: $85000000, High: $120000000)
Key Considerations
- Privacy concerns may arise as donors are required to waive some protections on their medical data, requiring careful balancing of privacy with transparency needs.
- Costs are primarily from the implementation and enforcement of policy changes and the operational adjustments required at tissue banks.