PubMed · 11645048
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Erik Parens. 1998. What differences make a difference?. https://doi.org/10.1017/s096318019870101x
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BACKGROUND: Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. DISCUSSION: In this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research. SUMMARY: The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required.
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Numerous factors affect decision making in the prehospital provision of resuscitative care. This study was undertaken to determine current practices involved in the initiation, continuation and termination of resuscitative efforts, and the impact of advance directives, in the prehospital resuscitation setting. This cross-sectional mailed questionnaire surveyed 3807 members of the National Association of Emergency Medical Technicians. The study instrument included questions regarding the termination and withholding of resuscitative efforts in the prehospital setting, as well as survival rates, local protocols and compliance with advance directives. Of 1546 respondents (41% response rate), with a mean 9.0 years of experience, most (89%) indicated that they would withhold resuscitative efforts in the presence of an official state-approved advance directive. However, very few providers would withhold resuscitative efforts if only an unofficial document (4%) or verbal report of an advance directive (10%) were available. Providers with more than 10 years experience were more likely to withhold resuscitation attempts in the presence of only a verbal report of an advance directive (p = 0.02, Chi-square), and were more likely to withhold resuscitation attempts in situations they considered futile (p = 0.001, Chi-square). Most (77%) respondents have local EMS guidelines for termination of resuscitation in the prehospital setting, but 23% of those consider existing guidelines to be inadequate. The majority of prehospital providers stated that they honor official state-approved advance directives, but do not follow directives from unofficial documents or verbal reports of advance directives. More experienced providers stated that they withhold resuscitative efforts more often in futile situations, or in the presence of unofficial advance directives. Advance directives should be utilized more uniformly among patients who wish to forgo resuscitative efforts in the event of cardiac arrest. Because many local protocols are judged to be inadequate, we support the institution of improved clinical guidelines regarding the prehospital termination of resuscitative efforts.