Public participation in medical policy-making and the status of consumer autonomy
The example of newborn-screening programs in the United States
Bibliographic Data
| ID | 11026077 |
|---|---|
| Authors | E H Hiller, Elaine Hiller (Brandeis University), Gretchen Landenburger, Marvin R Natowicz (0000-0002-3018-546X) |
| Year | 1997 |
| Volume | 87 |
| Issue | 8 |
| Pages | 1280-1288 |
| Publication date | 1997-08-01 |
| Peer Reviewed | Yes |
| Open Access | No |
| Type | ARTICLE |
| Venue | American Journal of Public Health (JOURNAL) |
| Journal identifiers | ISSN: 0090-0036 • E-ISSN: 1541-0048 |
| Publisher | American Public Health Association (PUBLISHER • US) |
| DOI | 10.2105/ajph.87.8.1280 |
| PMID | 9279262 |
| OpenAlex | W2170831393 |
| Language | EN |
| Citations received | 18 |
| References cited | 24 |
OBJECTIVES: State newborn-screening programs collectively administer the largest genetic-testing initiative in the United States. We sought to assess public involvement in formulating and implementing medical policy in this important area of genetic medicine. METHODS: We surveyed all state newborn-screening programs to ascertain the screening tests performed, the mechanisms and extent of public participation, parental access to information, and policies addressing parental consent or refusal of newborn screening. We also reviewed the laws and regulations of each state pertaining to newborn screening. RESULTS: Only 26 of the 51 state newborn-screening programs reported having advisory committees that include consumer representation. Fifteen states reported having used institutional review boards, another venue for public input. The rights and roles of parents vary markedly among newborn-screening programs in terms of the type and availability of screening information as well as consent-refusal and follow-up policies. CONCLUSIONS: There is clear potential for greater public participation in newborn-screening policy-making. Greater public participation would result in more representative policy-making and could enhance the quality of services provided by newborn-screening programs
Alternative medicine · Autonomy · Family medicine · Genetic testing · Informed consent · Newborn screening · Political science · Public health · Public policy · State (computer science) · BRCA gene mutations in cancer · Law · Medicine · Metabolism and Genetic Disorders · Nursing · Prenatal Screening and Diagnostics · Pediatrics
Defining the 'social
Dollars, disease, and democracy
Questioning the Need for Informed Consent
Parents like me
Parenting in the genomic age
The potential contribution of decision aids to screening programmes
Divergent evolution of newborn screening
Transferring Knowledge About Human Subjects Protections and the Role of Institutional Review Boards in a Community-Based Participatory Research Project
The Politics of Public Policy in Ghana
Genetics and public health—evolution, or revolution
Genetic screening and public health
Community Involvement in Developing Policies for Genetic Testing
Concerns of Newborn Blood Screening Advisory Committee Members Regarding Storage and Use of Residual Newborn Screening Blood Spots
Newborn Screening for Developmental Disabilities
Questioning the Consensus
Newborn Screening by Tandem Mass Spectrometry
Ordinary people only
Challenges of citizen participation in regional health authorities
| Unique citing works | 18 |
|---|---|
| Citations per year | 0,62 |
| Citation span | 1997 - 2018 (22) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 17 |