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Biomedical subjects

Ruth R Faden

Publications and source records attributed to Ruth R Faden.

At least 19 recordsLinked to original sources
PubMed2005

The social implications of embryo cryopreservation.

OBJECTIVE: To summarize the existing literature regarding the social implications of embryo cryopreservation and outline areas in need of further study. RESULT(S): The potential social impact of oocyte cryopreservation has not been investigated. Embryo cryopreservation has been increasingly used to improve the cost-effectiveness of in vitro fertilization (IVF) and expand the options available to infertile couples, yet its widespread adoption has occurred more rapidly than our ability to study the social consequences for the couples and health professionals involved. For maintaining cryopreserved embryos, the existing literature is fragmented and incompletely explores the effects on an infertile couple's psychosocial health and personal relationships, their family planning strategies, or their preferences for the disposition of the embryos. Managing unclaimed embryos continues to create challenges for assisted reproduction professionals. CONCLUSION(S): We currently lack a thorough understanding of the numerous social implications of cryopreservation. Major areas for future research include the impact of stored embryos on couples' fertility intentions and psychosocial health, factors that affect couples' decisions about embryo disposition, strategies to minimize unclaimed embryos, and the consequences of oocyte/ovarian cryopreservation.

Cryopreservation↗
PubMed2004

Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions.

There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policy-making should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.

Adolescent↗
PubMed2004

Bioethics: a field in transition.

Bioethics is clearly a field in transition, if not confusion. The author examines two questions at the core of this transition. First, how will bioethics accommodate the different training needs and professional interests of those who understand themselves to be primarily scholars of bioethics, and those who understand themselves to be primarily practitioners of bioethics? And second, whether bioethics will continue to function as an interdisciplinary field or whether it will morph into a discipline in its own right.

Bioethics↗
PubMed2003

Consent and compensation: a social compact for smallpox vaccine policy in the event of an attack.

In the event of a widespread biological attack involving smallpox, it may not only be morally permissible, but morally obligatory, to dispense with the ordinary requirements of informed consent for vaccination. The government should also commit to educating the public about the vaccine, distributing the vaccine efficiently and fairly, and ensuring access to health care to those who experience adverse events as a result of vaccination. In addition, the government should provide a program of financial compensation for any persons who experience permanent disability as a consequence of vaccination and for the families of those who die as a result of vaccination.

Bioterrorism↗
PubMed2003

Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions.

Despite policy attention to medical privacy and patient confidentiality, little empirical work exists documenting and comparing experiences of persons with genetic versus nongenetic medical conditions concerning persons' disclosure to others as well as their views about appropriate confidentiality to and within families. The goal of this cross-sectional interview study with nearly 600 participants was to document and compare the experiences, attitudes, and beliefs of persons with strictly genetic conditions to those of persons with or at risk for other serious medical conditions in terms of the degree to which they have disclosed to others that they have the condition and their views about how others ought to maintain the confidentiality of that information. While almost all participants reported that family members knew about their condition, results suggest participants want to control that disclosure themselves and do not want doctors to disclose information to family members without their knowledge. Similarly, participants do not think family members should be able to get information about them without their knowledge but feel overwhelmingly that it is a person's responsibility to disclose information about hereditary conditions to other family members. Ambivalence about confidentiality was evident: while most participants did not mind doctors sharing information with other doctors when it was for their benefit, the majority also felt that doctors should be punished for releasing information without their permission. The views and experiences reported here generally did not differ by whether participants had genetic versus nongenetic conditions, suggesting that the extensive policy focus on genetic information may be unwarranted.

Adult↗
PubMed2003

Safety issues in cell-based intervention trials.

We report on the deliberations of an interdisciplinary group of experts in science, law, and philosophy who convened to discuss novel ethical and policy challenges in stem cell research. In this report we discuss the ethical and policy implications of safety concerns in the transition from basic laboratory research to clinical applications of cell-based therapies derived from stem cells. Although many features of this transition from lab to clinic are common to other therapies, three aspects of stem cell biology pose unique challenges. First, tension regarding the use of human embryos may complicate the scientific development of safe and effective cell lines. Second, because human stem cells were not developed in the laboratory until 1998, few safety questions relating to human applications have been addressed in animal research. Third, preclinical and clinical testing of biologic agents, particularly those as inherently complex as mammalian cells, present formidable challenges, such as the need to develop suitable standardized assays and the difficulty of selecting appropriate patient populations for early phase trials. We recommend that scientists, policy makers, and the public discuss these issues responsibly, and further, that a national advisory committee to oversee human trials of cell therapies be established.

Animals↗
PubMed2002

Planning for death but not serious future illness: qualitative study of housebound elderly patients.

OBJECTIVE: To understand how elderly patients think about and approach future illness and the end of life. DESIGN: Qualitative study conducted 1997-9. SETTING: Physician housecall programme affiliated to US university. PARTICIPANTS: 20 chronically ill housebound patients aged over 75 years who could participate in an interview. Participants identified through purposive and random sampling. MAIN OUTCOME MEASURES: In-depth semistructured interviews lasting one to two hours. RESULTS: Sixteen people said that they did not think about the future or did not in general plan for the future. Nineteen were particularly reluctant to think about, discuss, or plan for serious future illness. Instead they described a "one day at a time," "what is to be will be" approach to life, preferring to "cross that bridge" when they got to it. Participants considered end of life matters to be in the hands of God, though 13 participants had made wills and 19 had funeral plans. Although some had completed advance directives, these were not well understood and were intended for use only when death was near and certain. CONCLUSIONS: The elderly people interviewed for this study were resistant to planning in advance for the hypothetical future, particularly for serious illness when death is possible but not certain.

Advance Directives↗