ArticleFlorida law review2019
A FAUSTIAN BARGAIN THAT UNDERMINES RESEARCH PARTICIPANTS' PRIVACY RIGHTS AND RETURN OF RESULTS.
Article in Florida law review, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Ethical Principles, Constraints and Opportunities in Clinical Proteomics.Molecular & cellular proteomics : MCP · 2021Pooled it
- Far from Home: Managing Incidental Findings in Field Research with Portable MRI.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2024Article
- Returning incidentally discovered Hepatitis C RNA-seq results to COPDGene study participants.NPJ genomic medicine · 2023Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- An Ethics Checklist for Digital Health Research in Psychiatry: Viewpoint.Journal of medical Internet research · 2022Article
- Returning actionable genomic results in a research biobank: Analytic validity, clinical implementation, and resource utilization.American journal of human genetics · 2021Article
- Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- The Streetlight Effect: Regulating Genomics Where the Light Is.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Return of Results in Participant-Driven Research: Learning from Transformative Research Models.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Clarify the HIPAA right of access to individuals' research data.Nature biotechnology · 2019Article
- THE GENETIC INFORMATION NONDISCRIMINATION ACT AT AGE 10: GINA'S CONTROVERSIAL ASSERTION THAT DATA TRANSPARENCY PROTECTS PRIVACY AND CIVIL RIGHTS.William and Mary law review · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
A 2018 committee report published by the highly respected National Academies of Science, Engineering, and Medicine (the Report) recommends stripping research participants of crucial data privacy rights and discarding decades of carefully deliberated consensus guidelines for the ethical return of results and data from research. This Article traces these disturbing recommendations to three root causes: (1) a statement of task that blocked careful and impartial analysis of a disputed legal matter central to the Report; (2) a piecemeal legal analysis that omitted relevant strands of law; and (3) the inappropriate conflation of two distinct concepts-the return of individual research results (the stated subject of the Report) and privacy-enabling individual access rights, which have a nearly fifty-year legal history long predating the modern debate about return of results. The Report's recommendations would erect new barriers to the return of results and, simultaneously, dial back a core data privacy right that Americans-including many research participants-currently enjoy. We urge extreme caution in implementing this Report's flawed recommendations. Congress has elevated the right to see one's personal information to the status of a civil right in many different data environments. Diminishing individual access in the research context erodes its status as a right more broadly.
Identifiers
34305361PMC8302004What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.