ArticleVanderbilt journal of entertainment and technology law2017
Power to the People: Data Citizens in the Age of Precision Medicine.
Article in Vanderbilt journal of entertainment and technology law, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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
14 citing papers in PubMed.
- The ethical aspects of human organ-on-chip models: A mapping review.Stem cell reports · 2025Review
- Ethical Oversight and Social Licensing of Portable MRI Research.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2024Article
- Transformed Health Ecosystems-Challenges for Security, Privacy, and Trust.Frontiers in medicine · 2022Article
- Citizen science as a data-based practice: A consideration of data justice.Patterns (New York, N.Y.) · 2021Article
- Ethical and Safety Concerns Regarding the Use of Mental Health-Related Apps in Counseling: Considerations for Counselors.Journal of technology in behavioral science · 2021Article
- A qualitative study of big data and the opioid epidemic: recommendations for data governance.BMC medical ethics · 2020Article
- Open Humans: A platform for participant-centered research and personal data exploration.GigaScience · 2019Review
- People-powered data collaboratives: fueling data science with the health-related experiences of individuals.Journal of the American Medical Informatics Association : JAMIA · 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
- Patient informaticians: Turning patient voice into patient action.JAMIA open · 2018Article
- Health Research with Big Data: Time for Systemic Oversight.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Creating a data resource: what will it take to build a medical information commons?Genome medicine · 2017Article
- Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science.American journal of law & medicine · 2016Article
- Understanding FDA regulation of DTC genetic tests within the context of administrative law.American journal of human genetics · 2010Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
Abstract
Twentieth-century bioethics celebrated individual autonomy but framed autonomy largely in terms of an individual's power to make decisions and act alone. The most pressing challenges of big data science in the twenty-first century can only be resolved through collective action and common purpose. This Article surveys some of these challenges and asks how common purpose can ever emerge on the present bioethical and regulatory landscape. The solution may lie in embracing a broader concept of autonomy that empowers individuals to protect their interests by exercising meaningful rights of data citizenship. This Article argues that twentieth-century bioethics was a paternalistic, top-down affair in which self-proclaimed ethics experts set standards to protect research subjects portrayed as autonomous yet too vulnerable and disorganized to protect themselves. The time may be ripe for BioEXIT, a popular uprising of regular people seeking a meaningful voice in establishing citizen-led ethical and privacy standards to advance big-data science while addressing the concerns people feel about the privacy of their health data.
Identifiers
29118898PMC5673282What 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.