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Does an appeal to the common good justify individual sacrifices for genomic research?

In genomic research the ideal standard of free, informed, prior, and explicit consent is believed to restrict important research studies. For certain types of genomic research other forms of consent are therefore proposed which are ethically justified by an appeal to the common good. This notion is often used in a general sense and this forms a weak basis for the use of weaker forms of consent. Here we examine how the notion of the common good can be related to individual health, health care, and genomic research and we use this analysis to propose more precise criteria to justify forms of consent which diverge from the ideal standard.

Delivery of Health Care↗

Informed consent to treatment in clinical trials.

Special characteristics of clinical trials place unique demands on the concept and practice of informed consent to treatment. We focus on the practical problem that consent to treatment forms are not typically able to be understood by patients in clinical trials research. Informed consent forms are significantly less comprehensible than popular press written material and may be as difficult to read as medical journals. Several guidelines for improving informed consent to treatment documents such as the use of non-professionals and patients to critique drafts of consent to treatment forms are proposed and discussed. The use of these guidelines can insure that patients have the opportunity to understand more clearly what their treatment will involve within a clinical trial before they give an informed consent.

Clinical Trials as Topic↗

Informed consent in sports medicine.

Informed consent acknowledges the autonomy of a person to make choices consistent with personal goals and values. The virtuous physician will understand that the athlete's autonomy is severely diminished by internal and external forces beyond the control of medical personnel. Because of this, a truly informed consent in sports medicine is even more difficult to achieve than in other medical specialties. Awareness of these problems does not assure a genuine informed consent, but being unaware of them isa guarantee of its impossibility.

Athletic Injuries↗

Consenting to blood: what do patients remember?

We sought to characterize the consent process for transfusion and determine its impact on patients' knowledge and level of comfort with receiving blood. We identified all adult patients who had received blood transfusion at a tertiary care centre over 3 months. Patients who were discharged each received a survey that assessed their (1) recall of the consent process, (2) recall of information conveyed, (3) assessment of the discussion's understandability and (4) perceived knowledge of as well as comfort level with transfusion as a result of the discussion. Overall, 80% of respondents recalled discussing and signing an informed consent. Information was mostly conveyed by attending physicians (35%) and consent obtained in the patient's hospital room (38%) or the preadmission clinic (19%). Although the majority recalled the consent process, many did not recall the discussion of specific transfusion risks or alternatives to donor blood (88%). Although the majority felt the discussion was at least somewhat understandable (77%), only 35% felt better informed and more comfortable with accepting blood. Despite implementation of written informed consent for transfusion, patients' recollection and understanding of risks and alternatives remain poor. This suggests the need for improving risk communication.

Adolescent↗

Effects of presentation method on the understanding of informed consent.

BACKGROUND/AIM: Knowledge of which presentation methods impart the most information to patients can improve the informed consent discussion. The purpose of this study was to determine if the comprehension and recall of the informed consent discussion varied with presentation method. METHODS: Randomised, prospective study at the University of Arkansas for Medical Sciences. 90 freshmen medical students were randomly assigned to one of three groups and separately went through an informed consent on cataract surgery. Group A heard an informed consent presentation. Group B was shown diagrams while hearing the same presentation. Group C heard the consent and then watched an informational video on cataract surgery. A 10 point multiple choice quiz was administered after the presentation and repeated again 1 week later. RESULTS: Scores from each group were averaged as number correct out of 10 questions. For same day scores, group C scores (7.70 (SD 1.24)) were significantly higher than group A (6.39 (1.63)). One week testing revealed that group C (6.96 (1.62)) recalled more between the two time periods and scored significantly higher than groups A (5.15 (2.11)) and B (5.54 (1.64)). CONCLUSIONS: This study found differences in the participants' ability to recall facts based on the manner in which the material was presented. It clearly demonstrated that the use of visual aids improved the ability to remember facts and risks associated with cataract surgery beyond a verbal presentation alone. It also showed a benefit of the repetition of information as provided by audiovisual presentations that can be used in conjunction with the physician-patient discussion.

Audiovisual Aids↗