Social contract theory and just decision making: lessons from genetic testing for the BRCA mutations
Keywords
AccountabilityBreast Cancer
Cancer
Consultation
Decision Making
Genetic Testing
Genetics
Health
Health Care
Health Insurance
Health Services
Health Services
Insurance
Intellectual Property
Patents
Property
Philosophical Ethics
Social Control of Science and Technology
Genetic Screening / Genetic Testing
Economics of Health Care
Full record
Show full item recordOnline Access
http://xr8el9yb8v.search.serialssolutions.com/?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Social+contract+theory+and+just+decision+making:+lessons+from+genetic+testing+for+the+BRCA+mutations&title=Kennedy+Institute+of+Ethics+Journal&volume=14&issue=2&date=20040600&au=Williams-Jones,+Bryn;+Burgess,+Michael+M.http://hdl.handle.net/10822/504807
Abstract
Decisions about funding health services are crucial to controlling costs in health care insurance plans, yet they encounter serious challenges from intellectual property protection- -e.g., patents--of health care services. Using Myriad Genetics' commercial genetic susceptibility test for hereditary breast cancer (BRCA testing) in the context of the Canadian health insurance system as a case study, this paper applies concepts from social contract theory to help develop more just and rational approaches to health care decision making. Specifically, Daniels's and Sabin's "accountability for reasonableness" is compared to broader notions of public consultation, demonstrating that expert assessments in specific decisions must be transparent and accountable and supplemented by public consultation.Date
2011-07-12Identifier
oai:repository.library.georgetown.edu:10822/504807Kennedy Institute of Ethics Journal 2004 June; 14(2): 115-142
http://xr8el9yb8v.search.serialssolutions.com/?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Social+contract+theory+and+just+decision+making:+lessons+from+genetic+testing+for+the+BRCA+mutations&title=Kennedy+Institute+of+Ethics+Journal&volume=14&issue=2&date=20040600&au=Williams-Jones,+Bryn;+Burgess,+Michael+M.
http://hdl.handle.net/10822/504807
Related items
Showing items related by title, author, creator and subject.
-
Privacy-preserving genomic testing in the clinic: A model using HIV treatmentMclaren P.J.; Raisaro J.L.; Aouri M.; Rotger M.; Ayday E.; Bartha I.; Delgado M.B.; Vallet Y.; Günthard H.F.; Cavassini M.; et al. (Nature Publishing Group, 2018-04-12)Purpose:The implementation of genomic-based medicine is hindered by unresolved questions regarding data privacy and delivery of interpreted results to health-care practitioners. We used DNA-based prediction of HIV-related outcomes as a model to explore critical issues in clinical genomics.Methods:We genotyped 4,149 markers in HIV-positive individuals. Variants allowed for prediction of 17 traits relevant to HIV medical care, inference of patient ancestry, and imputation of human leukocyte antigen (HLA) types. Genetic data were processed under a privacy-preserving framework using homomorphic encryption, and clinical reports describing potentially actionable results were delivered to health-care providers.Results:A total of 230 patients were included in the study. We demonstrated the feasibility of encrypting a large number of genetic markers, inferring patient ancestry, computing monogenic and polygenic trait risks, and reporting results under privacy-preserving conditions. The average execution time of a multimarker test on encrypted data was 865 ms on a standard computer. The proportion of tests returning potentially actionable genetic results ranged from 0 to 54%.Conclusions:The model of implementation presented herein informs on strategies to deliver genomic test results for clinical care. Data encryption to ensure privacy helps to build patient trust, a key requirement on the road to genomic-based medicine. © 2015 American College of Medical Genetics and Genomics.
-
The CGIAR at 40Ozgediz, Selcuk (World Bank, Washington, DC, 2016-03-03)The Consultative Group on International
 Agricultural Research (CGIAR) has been one of the most
 successful research-for-development organizations over the
 past 40 years. The $11 billion invested by CGIAR donor
 members in research conducted by the international Centers
 under its umbrella has yielded many multiples of that sum in
 economic benefits to developing and emerging countries.
 Annual economic benefits of research on rice in Asia alone
 are equivalent to the total investment made by CGIAR donors
 over 4 decades, leaving aside benefits in other continents
 and from other research conducted by CGIAR institutions. The
 CGIAR‘s success is due in part to the way it was organized.
 The Group itself was an informal forum for dialogue among
 donor members about research priorities, investment options,
 and the continuing relevance and effectiveness of the
 institutions supported. The international centers
 constituted the core of the CGIAR. Each was (and still is)
 an autonomous international organization governed by an
 international board. The Group and the Centers were
 originally advised by the Technical Advisory Committee (TAC)
 of distinguished scientists from developing and developed
 countries, each appointed as an individual. The Group’s
 activities were facilitated by its Secretariat based at the
 World Bank in Washington, DC, and TAC’s activities by
 another secretariat based at the food and agriculture
 organization in Rome.
-
Nurses' professed knowledge of genetics and genetic counselingTomatir, A.G.; Sorkun, H.Ç.; Demirhan, H.; Akdaǧ, B. (2019-08-16)All over the world, the increased awareness of the importance of early diagnosis of genetic diseases has given them priority in primary health care. However, more recent surveys indicate that genetics content is still lacking in nursing curricula. This survey aimed to measure the current status of primary care nurses' knowledge about genetics and genetic counseling, and the educational needs of nurses related to human genetics in the Denizli region of Turkey. This area in western Turkey has an 11.7% rate of consanguineous marriages; about 3.5% of the population are hemoglobinopathies carrier and 3.2% are thalassemia carriers. Data were collected on forms that aimed to obtain information about nurses' approaches to genetics and genetic counseling. A total of 86 of 106 nurses working in Denizli province returned the questionnaire (response rate of 81.1%). Phenylketonuria, at 61.5%, and Cooley's anemia, at 60.0%, were identified as the subjects these nurses were most knowledgeable about in terms of genetic disorders. A high percentage of nurses admitted they had insufficient knowledge about the genetic basis of diseases (96.4%), inheritance patterns (98.9%), ethical and legal issues (100.0%), genetic counseling (100.0%), gene testing (95.9%), and genetic engineering (97.9%). About 67% of nurses stated they would like to attend a training course on these subjects. As a result of this study a genetics course is planned for nurses so they can actively participate in the prevention and early diagnosis of genetic disease. © 2006 Tohoku University Medical Press.