Giving and Withholding of Information following Genomic Screening: Challenges Identified in a Study of Primary Care Physicians in Estonia
- 251 Downloads
The use of predictive genomic information to improve medical care remains a contentious topic. However, it is generally agreed that the potential of genomics to improve medicine relies on medical care providers’ ability to effectively communicate and put in context the meaning of test results. As the amount of information available increasingly outstrips providers’ ability to offer qualified judgments on what the information means, consumers inevitably will be faced with test results of uncertain significance, as well as difficult questions about what they do or do not wish to know. Results of this survey of 64 primary care doctors in Estonia suggests that it may be inherently difficult for physicians to withhold genetic information obtained by genome scans or sequencing, even when they believe that having that information is not in the best interests of their patient. The descriptive data suggest introducing genomic medicine through primary care physicians, as proposed by the Estonian Genome Center of the University of Tartu, will require further genetics education as well as a carefully developed set of guidelines for determining where, when and how to use test results.
KeywordsPredictive genetic testing Primary care physicians Genomic information Genomic healthcare
This work was supported by OpenGENE project, the Estonian Ministry of Social Affairs (12.2-3/3919) and the Estonian Ministry of Science and Education (10.1–8.1/19), targeted financing from the Estonian Government (SF0180142s08 and SF0180026s09), and by the European Union through the European Regional Development Fund to the Estonian Centre of Excellence in Genomics.
Disclosure of interests
The authors declare no conflict of interests.
- Button, K. P. (2008). Development of a Genetic Education Series for Non-Genetics Health Professionals. Bronxville: Sarah Lawrence College.Google Scholar
- Campell, C. D. (2003). Training Physicians for the 21st Century: A Collaboration Between Genetic Counselors and Physicians. Bronxville: Sarah Lawrence College.Google Scholar
- COE. (2010). Council of Europe, Recommendation CM/Rec(2010)11 of the Committee of Ministers to member states on the impact of genetics on the organisation of health care services and training of health professionals (Vol. 2010).Google Scholar
- EPSU. (2010). European Federation of Public Service Unions. Estonia: Health Care Reforms. 2010, from http://www.epsu.org/a/2242
- HGRA. (2000). Human Genes Research Act. from http://www.geenivaramu.ee/index.php?langeng&sub18&eetika1
- Leitsalu, L. (2010). Counseling for Complex Diseases: Incorporating Predictive Genetic Testing into the National Health Care System of Estonia. Bronxville: Sarah Lawrence College.Google Scholar
- Mahajan, P., Meyer, K. S., Wall, G. C., & Price, H. J. (2010). Clinical applications of pharmacogenomics guided warfarin dosing. Pharm World Sci.Google Scholar
- Metspalu, A. (2009). The Estonian Genome Project of University of Tartu. Paper presented at the Biobanking WorkshopGoogle Scholar
- NHGRI. (2009). National Human Genome Research Institute. Retrieved November, 2009, from http://www.genome.gov/10001772
- PHGEN. (2010). Public Health Genomics European Network. Retrieved February, 2010, from http://phgen.eu/typo3/index.php
- SACGHS. (1999–2000). A Public Consultation on Oversight of Genetic Tests (1999–2000). from http://oba.od.nih.gov/SACGHS/sacgt_documents.html
- Savage, S. K. (2007). Predictive Genetic Testing in Minors: Difficult Decisions for Complex Cases. Bronxville: Sarah Lawrence College.Google Scholar
- Steinmark, L. (2009). U.S. Primary Care Providers’ Continuing Genetics Education Needs: A Survey and Literature Review. Bronxville: Sarah Lawrence College.Google Scholar
- Wilson, J. (2005). To know or not to know? Genetic ignorance, autonomy and paternalism. Bioethics, 19(5–6), 492–504.Google Scholar
- WHO. (2001). European Observatory on Health Care Systems, Health Care Systems in Transition, Estonia. [Electronic Version]. Brussels: European Commission and the WHO, 7, from www.euro.who.int/document/e85516.pdf]