Thought Leader Perspectives on Participant Protections in Precision Medicine Research
Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current “web” of legal protections, including technical data security measures, as well...
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| Published in | The Journal of law, medicine & ethics Vol. 47; no. 1; pp. 134 - 148 |
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| Main Authors | , , |
| Format | Journal Article |
| Language | English |
| Published |
Los Angeles, CA
SAGE Publications
01.03.2019
Cambridge University Press |
| Subjects | |
| Online Access | Get full text |
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| Abstract | Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current “web” of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research. |
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| AbstractList | Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current “web” of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research. Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current "web" of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research.Precision medicine research is rapidly taking a lead role in the pursuit of new ways to improve health and prevent disease, but also presents new challenges for protecting human subjects. The extent to which the current "web" of legal protections, including technical data security measures, as well as measures to restrict access or prevent misuse of research data, will protect participants in this context remains largely unknown. Understanding the strength, usefulness, and limitations of this constellation of laws, regulations, and procedures is critical to ensuring not only that participants are protected, but also that their participation decisions are accurately informed. To address these gaps, we conducted in-depth interviews with a diverse group of 60 thought-leaders to explore their perspectives on the protections associated with precision medicine research. |
| Author | Brelsford, Kathleen M. Beskow, Laura M. Hammack, Catherine M. |
| Author_xml | – sequence: 1 givenname: Catherine M. surname: Hammack fullname: Hammack, Catherine M. organization: is an Associate in Health Policy in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN) – sequence: 2 givenname: Kathleen M. surname: Brelsford fullname: Brelsford, Kathleen M. organization: is an Associate in Health Policy in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN) – sequence: 3 givenname: Laura M. surname: Beskow fullname: Beskow, Laura M. organization: is an Associate in Health Policy in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center (Nashville, TN) |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/30994064$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1353/aph.2017.0042 10.1007/BF03340407 10.1038/nrg3723 10.1177/1525822X05279903 10.1371/journal.pone.0207842 10.14778/3007328.3007330 10.1056/NEJMp1500523 10.1126/science.1095019 10.1017/9781108147972.016 10.1353/pbm.2016.0021 10.1159/000334718 |
| ContentType | Journal Article |
| Copyright | 2019 American Society of Law, Medicine & Ethics Copyright © American Society of Law, Medicine and Ethics 2019. This work is licensed under the Creative Commons Attribution License http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. 2019 American Society of Law, Medicine & Ethics 2019 American Society of Law, Medicine & Ethics |
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| Title | Thought Leader Perspectives on Participant Protections in Precision Medicine Research |
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