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Biomedical subjects

R Dresser

Publications and source records attributed to R Dresser.

At least 19 recordsLinked to original sources
PubMed2001

Advance directives as acts of communication: a randomized controlled trial.

BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.

Advance Care Planning↗
PubMed1999

Public advocacy and allocation of federal funds for biomedical research.

Members of Congress and officials of the National Institutes of Health face heightened pressure from public advocacy groups seeking more funding for research on specific health conditions. In response, Congress and the Institute of Medicine have urged the NIH to create more opportunities for the public to participate in decision making on allocation of biomedical research resources. The ethical and policy implications of including advocates in the deliberations are explored, leading to the conclusion that public participation could contribute to more defensible decisions under three conditions: public participants are fairly selected and meaningful opinions are solicited; public participants look beyond their narrow constituencies to consider the health needs of the broader public; and NIH officials develop materials to assist participants with their deliberations.

Consumer Advocacy↗
PubMed1996

Mentally disabled research subjects. The enduring policy issues.

Mentally disabled adults often serve as subjects in research on mental illness, developmental disabilities, dementia, and other conditions associated with mental impairment. Since US regulatory policy fails to resolve many ethical issues presented by such research, investigators and institutional review boards must determine the appropriate standards and procedures for studies involving adults with mental disabilities. Procedures for capacity assessment and information disclosure should enhance the autonomy of capable subjects and accurately identify subjects incapable of independent choice. Research teams should inform proxy decision makers of their ethical responsibities. Decisionally incapable adults objecting to research involvement should rarely be included in studies. Researchers, institutional review boards, advocacy groups, and federal officials should collaborate to improve evaluation of risks and potential benefits to decisionally incapable subjects. These groups should also seek consensus on appropriate risk limits in studies presenting no prospect of direct benefit to decisionally incapable subjects. Finally, subject populations should be represented in research planning and review activities.

Adult↗
PubMed1993

Sanctions for research misconduct: a legal perspective.

The author discusses the legal principles that could assist in the design and administration of the official response to conduct found to threaten the integrity of the scientific process. The primary emphasis is on the principles that shape decisions about punishment. In the present climate of uncertainty about misconduct, it is difficult to adopt fair and consistent approaches to the selection of sanctions and other remedial actions. Officials have taken a variety of actions in response to unacceptable research behavior. Some federal actions have involved proceedings to recover the offending grant recipients' federal funds, prohibiting them from receiving federal grants or contracts for a set period, terminating or withholding ongoing grant support, and mandating future supervision of the offenders' research conduct; and universities have denied or revoked tenure, required or accepted retirement, and disclosed misconduct findings to potential future employers. Three types of legal remedies seem to have influenced the selection of sanctions in past cases: (1) the quasi-contractual legal remedy of restitution, (2) the philosophy of "just deserts," or retribution, based on the largely intuitive idea that the individual who engages in criminal conduct deserves punishment, and (3) deterrence of misconduct. Each type has a range of considerations and implications, and officials should thoughtfully consider the appropriate role of each, because their selection of sanctions will probably have a significant effect on the research community's perceptions of the system's fairness and efficacy.

Biomedical Research↗