Understanding preferences for disclosure of individual biomarker results among participants in a longitudinal birth cohort
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 36 (12):736-740 (2010)
Background To describe the preferences for disclosure of individual biomarker results among mothers participating in a longitudinal birth cohort. Methods We surveyed 343 mothers that participated in the Health Outcomes and Measures of the Environment Study about their biomarker disclosure preferences. Participants were told that the study was measuring pesticide metabolites in their biological specimens, and that the health effects of these low levels of exposure are unknown. Participants were asked whether they wanted to receive their results and their child's results. In addition, they were asked about their preferred method (letter vs in person) and format (more complex vs less complex) for disclosure of results. Results Almost all of the study participants wanted to receive their individual results (340/343) as well as their child's results (342/343). However, preferences for receiving results differed by education level. Mothers with less than a college degree preferred in-person disclosure of results more often than mothers with some college education or a college degree (34.3% vs 17.4% vs 7.9%, p<0.001). Similarly, mothers with less than a college education preferred a less complex disclosure format than mothers with some college education or a college degree (59.7% vs 79.1% vs 86.3%, p<0.0001). Conclusion While almost all study participants preferred to receive results of their individual biomarker tests, level of education was a key factor in predicting preferences for disclosure of biomarker results. To ensure effective communication of this information, disclosure of biomarker results should be tailored to the education level of the study participants
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson (2008). Public Expectations for Return of Results From Large-Cohort Genetic Research. American Journal of Bioethics 8 (11):36 – 43.
Ines M. Barrio-Cantalejo, Pablo Simón-Lorda, Adoración Molina-Ruiz, Fátima Herrera-Ramos, Encarnación Martínez-Cruz, Rosa Maria Bailon-Gómez, Antonio López-Rico & Patricia Peinado Gorlat (2013). Stability Over Time in the Preferences of Older Persons for Life-Sustaining Treatment. Journal of Bioethical Inquiry 10 (1):103-114.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine & Ethics 39 (4):605-613.
A. Jeffery (2005). Ethical Dilemmas: Feeding Back Results to Members of a Longitudinal Cohort Study. Journal of Medical Ethics 31 (3):153-153.
Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):8 – 17.
Akira Akabayashi, Brian Taylor Slingsby & Ichiro Kai (2003). Perspectives on Advance Directives in Japanese Society: A Population-Based Questionnaire Survey. [REVIEW] BMC Medical Ethics 4 (1):1-9.
Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer, Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.
Leslie Meltzer Henry, Undesirable Implications of Disclosing Individual Genetic Results to Research Participants.
Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish, The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.
Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish, Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children with Cancer.
Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. American Journal of Bioethics 12 (10):1-8.
G. Helgesson (2005). How to Handle Informed Consent in Longitudinal Studies When Participants Have a Limited Understanding of the Study. Journal of Medical Ethics 31 (11):670-673.
Annelien L. Bredenoord & Johannes Jm van Delden (2012). Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy. American Journal of Bioethics 12 (10):10-12.
Jeffrey Friedman (1991). Accounting for Political Preferences: Cultural Theory Vs. Cultural History. Critical Review 5 (3):325-351.
S. D. MacNeil & C. V. Fernandez (2007). Attitudes of Research Ethics Board Chairs Towards Disclosure of Research Results to Participants: Results of a National Survey. Journal of Medical Ethics 33 (9):549-553.
Added to index2010-09-13
Total downloads4 ( #622,541 of 1,932,544 )
Recent downloads (6 months)1 ( #456,270 of 1,932,544 )
How can I increase my downloads?