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Summer Johnson

Publications and source records attributed to Summer Johnson.

3 recordsLinked to original sources
PubMed2006

Multiple roles and successes in public bioethics: a response to the public forum critique of bioethics commissions.

National bioethics commissions have been critiqued for a variety of structural, procedural, and political aspects of their work. A more recent critique published by Dzur and Levin uses political philosophy to constructively critique the work of national bioethics commissions as public deliberative forums. However, this public forum critique of bioethics commissions ignores empirical research in political science and normative claims that suggest that advisory commissions can and should have diverse of functions beyond that of being public forums. The present paper argues that the public forum critique too narrowly considers the roles that bioethics commissions can play in public bioethics and ignores the moral obligation of commissions to fulfill their mandates. Evaluations of commissions must consider that these institutions can serve in capacities other than those of a public deliberative forum and use additional measures to evaluate the multiple roles and successes of bioethics commissions in public policy.

Advisory Committees↗
PubMed2005

Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions.

Protecting the confidentiality of medical information has been an issue of great interest in the fields of bioethics, public policy, and law. Few empirical studies have addressed patient experiences and attitudes toward disclosure of private medical information in multiple contexts such as health insurance, employment, and the family. Furthermore, it is unclear whether differences exist in experiences and attitudes about privacy between those living with a serious medical condition versus those who have a child with a medical condition. The study sought to determine whether attitudes and experiences related to medical privacy and confidentiality differ between affected adults and parents of affected children. Interviews were conducted with 296 adults and parents of children with sickle cell disease (SCD), cystic fibrosis (CF), or diabetes mellitus (DM). This cross-sectional study collected data regarding their experiences, attitudes, and beliefs concerning medical privacy and confidentiality. Multinomial logistic regression analysis was conducted on quantitative data. Qualitative analysis was conducted on data from open-ended response items. Parents disclose their child's diagnosis to others more often than affected adults disclose their own disease status. Parents are less likely than affected adults to regret their disclosure, to hope others do not find out, to have been pressured to share information, and to be asked about their disease by employers. Affected adults express greater concern about disclosure, a greater prevalence and greater fear of discrimination, and experience greater pressure from family members to disclose. Clinicians and researchers working with these populations should consider these differences in privacy and disclosure. Further study is necessary to examine the implications of these differences in attitudes and experiences concerning insurance, employment, and social interactions among persons with these conditions.

Adult↗