Literature DB >> 29118898

Power to the People: Data Citizens in the Age of Precision Medicine.

Barbara J Evans1.   

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.

Entities:  

Year:  2017        PMID: 29118898      PMCID: PMC5673282     

Source DB:  PubMed          Journal:  Vanderbilt J Entertain Technol Law        ISSN: 1942-6771


  19 in total

1.  The future of bioethics testimony: guidelines for determining qualifications, reliability, and helpfulness.

Authors:  B Spielman; G Agich
Journal:  San Diego Law Rev       Date:  1999

2.  Unpatients-why patients should own their medical data.

Authors:  Leonard J Kish; Eric J Topol
Journal:  Nat Biotechnol       Date:  2015-09       Impact factor: 54.908

3.  Research on medical records without informed consent.

Authors:  Franklin G Miller
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

4.  The big medical data miss: challenges in establishing an open medical resource.

Authors:  Eric J Topol
Journal:  Nat Rev Genet       Date:  2015-05       Impact factor: 53.242

5.  Is deidentification sufficient to protect health privacy in research?

Authors:  Mark A Rothstein
Journal:  Am J Bioeth       Date:  2010-09       Impact factor: 11.229

6.  Disentangling privacy from property: toward a deeper understanding of genetic privacy.

Authors:  Sonia M Suter
Journal:  George Washington Law Rev       Date:  2004-04

7.  The First Amendment Right to Speak About the Human Genome.

Authors:  Barbara J Evans
Journal:  Univ Pa J Const Law       Date:  2014-02-01

8.  The FDA and genomic tests--getting regulation right.

Authors:  Barbara J Evans; Wylie Burke; Gail P Jarvik
Journal:  N Engl J Med       Date:  2015-05-27       Impact factor: 91.245

9.  Patients want granular privacy control over health information in electronic medical records.

Authors:  Kelly Caine; Rima Hanania
Journal:  J Am Med Inform Assoc       Date:  2012-11-26       Impact factor: 4.497

10.  Large numbers of individuals are required to classify and define risk for rare variants in known cancer risk genes.

Authors:  Brian H Shirts; Angela Jacobson; Gail P Jarvik; Brian L Browning
Journal:  Genet Med       Date:  2013-12-19       Impact factor: 8.822

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  8 in total

1.  Barbarians at the Gate: Consumer-Driven Health Data Commons and the Transformation of Citizen Science.

Authors:  Barbara J Evans
Journal:  Am J Law Med       Date:  2016-11

2.  Health Research with Big Data: Time for Systemic Oversight.

Authors:  Effy Vayena; Alessandro Blasimme
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

3.  THE GENETIC INFORMATION NONDISCRIMINATION ACT AT AGE 10: GINA'S CONTROVERSIAL ASSERTION THAT DATA TRANSPARENCY PROTECTS PRIVACY AND CIVIL RIGHTS.

Authors:  Barbara J Evans
Journal:  William Mary Law Rev       Date:  2019

4.  People-powered data collaboratives: fueling data science with the health-related experiences of individuals.

Authors:  Barbara J Evans; Harlan M Krumholz
Journal:  J Am Med Inform Assoc       Date:  2019-02-01       Impact factor: 4.497

Review 5.  Open Humans: A platform for participant-centered research and personal data exploration.

Authors:  Bastian Greshake Tzovaras; Misha Angrist; Kevin Arvai; Mairi Dulaney; Vero Estrada-Galiñanes; Beau Gunderson; Tim Head; Dana Lewis; Oded Nov; Orit Shaer; Athina Tzovara; Jason Bobe; Mad Price Ball
Journal:  Gigascience       Date:  2019-06-01       Impact factor: 6.524

6.  Citizen science as a data-based practice: A consideration of data justice.

Authors:  Debora Irene Christine; Mamello Thinyane
Journal:  Patterns (N Y)       Date:  2021-03-23

7.  Transformed Health Ecosystems-Challenges for Security, Privacy, and Trust.

Authors:  Pekka Ruotsalainen; Bernd Blobel
Journal:  Front Med (Lausanne)       Date:  2022-03-25

8.  A qualitative study of big data and the opioid epidemic: recommendations for data governance.

Authors:  Elizabeth A Evans; Elizabeth Delorme; Karl Cyr; Daniel M Goldstein
Journal:  BMC Med Ethics       Date:  2020-10-21       Impact factor: 2.652

  8 in total

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