Banking on brains: Insights of brain donor relatives and friends from an experiential perspective

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.     

消费决策过程如何彰显社会地位?基于最优化决策策略的视角

彰显社会地位是消费者行为的一项基本动机。以往的消费心理学研究大量聚焦产品特征如何彰显社会地位(即令观察者产生高社会地位的推断), 却很少探讨消费决策过程这一购买决策中不可忽视的重要因素对社会地位推断有何影响。本研究试图构建一个基于最优化决策过程信息的社会地位推断模型, 系统探讨: (1)最优化决策过程能否及如何彰显消费者的社会地位; (2)彰显社会地位动机是否为消费者进行最优化决策的原因之一; (3)最优化决策过程如何通过社会地位推断影响观察者后续的消费行为。本研究将为社会地位推断研究提供新的视角, 扩展最优化决策研究的外延, 并从全新的角度揭示最优化决策的内涵。     

Le don du corps à la science enfin encadré juridiquement

Until very recently, the decision to donate a body to science was governed solely by the funeral policy. There was no legal framework setting out how such bodies were to be used. The Descartes mass grave scandal set in motion a process of reflection that led to the introduction of several provisions in the French Public Health Code. Reception facilities must now be licensed and have governance in place. Use may only be made of bodies once plans have been reviewed by scientific and educational ethics committees, and donors must be better informed as to how their bodies will be used. Families are given wider scope for inclusion, meaning that they can be notified of the wishes of the deceased, and of the possibility of having the body returned to them for burial. These long-awaited legal provisions are a real step forward. However, it is unfortunate that this work did not provide an opportunity for wider reflection on the use of bodies, particularly for research purposes. In fact, the provisions and supervisory bodies change according to whether the ultimate goal is research on bodies arising from a donation, research on samples, or research on brain-dead persons. It would have been worthwhile to standardize procedures and control bodies, and perhaps to include research on antique corpses in this reflection.     

Who shall be Allowed to Give? Living Organ Donors and the Concept of Autonomy

Free and informed consent is generally acknowledged as the legal andethical basis for living organ donation, but assessments of livingdonors are not always an easy matter. Sometimes it is necessary toinvolve psychosomatics or ethics consultation to evaluate a prospectivedonor to make certain that the requirements for a voluntary andautonomous decision are met. The paper focuses on the conceptualquestions underlying this evaluation process. In order to illustrate howdifferent views of autonomy influence the decision if a donor's offer isethically acceptable, three cases are presented – from Germany, theUnited States, and India. Each case features a person with questionabledecision-making capacity who offered to donate a kidney for a siblingwith severe renal insufficiency. Although the normative framework issimilar in the three countries, different or sometimes even contraryarguments for and against accepting the offer were brought forward. Thesubsequent analysis offers two explanations for the differences inargumentation and outcome in spite of the shared reference to autonomyas the guiding principle: (1) Decisions on the acceptability of a livingdonor cannot simply be deducted from the principle of autonomy but needto integrate contextual information; (2) understandings of the wayautonomy should be contextualized have an important influence on theevaluation of individual cases. Conclusion: Analyzing the conceptualassumptions about autonomy and its relationship to contextual factorscan help in working towards more transparent and better justifieddecisions in the assessment of living organ donors.     

Informed consent for the diagnosis of brain death: a conceptual argument

Background

This essay provides an ethical and conceptual argument for the use of informed consent prior to the diagnosis of brain death. It is meant to enable the family to make critical end-of-life decisions, particularly withdrawal of life support system and organ donation, before brain death is diagnosed, as opposed to the current practice of making such decisions after the diagnosis of death. The recent tragic case of a 13-year-old brain-dead patient in California who was maintained on a ventilator for over 2 years illustrates how such a consent would have made a crucial difference.

Methods

Conceptual, philosophical, and ethical analysis.

Results

I first consider a conceptual justification for the use of consent for certain non-beneficial and unwanted medical diagnoses. I suggest that the diagnosis of brain death falls into this category for some patients. Because the diagnostic process of brain death lacks the transparency of traditional death determination, has a unique epistemic structure and a complex risk-benefit profile which differs markedly from case to case, and presents conflicts of interest for physicians and society, I argue that pre-diagnostic counseling and informed consent should be part of the diagnostic process. This approach can be termed as “allow cardiac death”, whose parallel logic with “allow natural death” is discussed. I also discuss potential negative impacts on organ donation and health care cost from this proposal and offer possible mitigation. I show that the pre-diagnostic counseling can improve the possibility for well-thought-out decisions regarding organ donation and terminating life-support system in cases of hopeless prognosis. This approach differs conceptually from the pluralism of the definition of death, such as those in New Jersey and Japan, and it upholds the Uniform Determination of Death Act.

Conclusions

My intention is not to provide an instant panacea for the ongoing impasse of the brain death debate, but to point to a novel conceptual ground for a more pragmatic, and more patient- and family-centered approach. By enabling the family to consent to or decline the diagnostic process of brain death, but not to choose the definition of death, it upholds the current legal definition of death.

     

Informing Children of Their Newborn Screening Carrier Result for Sickle Cell or Cystic Fibrosis: Qualitative Study of Parents’ Intentions,Views and Support Needs

Newborn screening for cystic fibrosis and sickle cell disease enables the early identification and treatment of affected children, prolonging and enhancing their quality of life. Screening, however, also identifies carriers. There are minimal or no health concerns for carriers. There are, however, potential implications when carriers reach reproductive age, and thus research attention has been given to how best to convey information about these implications in a meaningful, balanced way which does not raise undue anxieties. Most research focuses on the communication from health professional to parent, yet ultimately this information is of greatest significance to the child. This study examines parents’ intentions to inform their child of newborn screening carrier results. Semi-structured interviews with 67 family members explored their intentions to inform the child, and related views and support needs. Parents almost unanimously indicated they planned to inform the child themselves. Health professionals were expected, however, to provide guidance on this process either to parents through advice and provision of written materials, or directly to the child. Although parents initially stated that they would convey the result once their child had developed the ability to understand the information, many appeared to focus on discrete life events linked to informed reproductive decision making. The results highlight ways in which health care providers may assist parents, including providing written material suitable for intergenerational communication and ensuring that cascade screening is accessible for those seeking it. Priorities for further research are identified in light of the results.     

Parent–Child Roles in Decision Making About Medical Research

Our objective is to understand how parents and children perceive their roles in decision making about research participation. Forty-five children (ages 4–15 years) with or without a chronic condition and 21 parents were the participants. A semistructured interview assessed perceptions of up to 4 hypothetical research scenarios with varying levels of risk, benefit, and complexity. Children were also administered the Peabody Picture Vocabulary Test, Third Edition, to assess verbal ability, as a proxy for the child's cognitive development. The audiotaped interviews were transcribed and analyzed for themes related to parent and child decision-making roles. Both parents and children varied in their perceptions of decision-making roles. Child perceptions of parental influence on decision making as knowledge-based increased with cognitive development, whereas perceptions of parental influence as power-based decreased. Both children and parents commented that they would collaborate with each other when making decisions. Collaborative decision making appeared to increase with cognitive development. These findings suggest that approaches to child assent and parent permission should consider the parent–child relationship and how children and families typically make decisions. Future research is necessary to explain variation in the process of research decision making across children and families, explore the role of collaboration on children's decision-making skills, and understand developmental trajectories and mechanisms related to research decision making.     

Participants' Understanding of the Process of Psychological Research: Informed Consent

Sixty-five undergraduates participating in a wide range of psychological research experiments were interviewed in depth about their research experiences and their views on the process of informed consent. Overall, 32% of research experiences were characterized positively and 41 % were characterized negatively. One major theme of the negative experiences was that experiments were perceived as too invasive, suggesting incomplete explication of negative aspects of research during the informed consent process. Informed consent experiences were viewed positively 80% of the time. However, most of the participants had a limited view of the purpose of informed consent: Less than 20% viewed the process as a decision point. Results suggest a number of common pitfalls to standard informed consent practices that have not generally been recognized. Results are discussed in terms of both ethical and methodological implications. Suggestions for improving the informed consent process are also provided.     

Participants' understanding of the process of psychological research: informed consent

Sixty-five undergraduates participating in a wide range of psychological research experiments were interviewed in depth about their research experiences and their views on the process of informed consent. Overall, 32% of research experiences were characterized positively and 41% were characterized negatively. One major theme of the negative experiences was that experiments were perceived as too invasive, suggesting incomplete explication of negative aspects of research during the informed consent process. Informed consent experiences were viewed positively 80% of the time. However, most of the participants had a limited view of the purpose of informed consent: less than 20% viewed the process as a decision point. Results suggest a number of common pitfalls to standard informed consent practices that have not generally been recognized. Results are discussed in terms of both ethical and methodological implications. Suggestions for improving the informed consent process are also provided.     

“Throwing Baby out with the Bath water#x201D;: Some Reflections on the Evolution of Reproductive Technology}

This article discusses section 156 of the Criminal Justice and Public Order Act 1994 which prohibits the use of eggs from aborted female foetuses for the purposes of reproduction. I argue that the pre-legislative debates focus only on the biological relationship between the aborted foetus and any ensuing child and foreclose the possibility of useful discussion about the potential merits of such technology. Kristeva's theory of abjection has been used in order to elucidate the strength of feeling about the use of eggs from the expelled foetus. I suggest that the ‘yuk’ factor stems from the potential for the blurring of the boundaries between life and death. In addition, I suggest that the stress placed on the biological link means that the foetus is ascribed special properties not given to live donors. Woman's very crucial role in reproductive technologies is therefore erased. The article argues that there are very good reasons why the debate on the subject should remain open. At present women donors have to undergo highly intrusive procedures in order to give eggs and the process is not without its health risks. The use of eggs from aborted foetuses certainly raises important consent issues but these could be addressed by placing women at the centre of the decision making process, starting with the recognition that it is women and not foetuses who have the remit and responsibility for giving consent for the use of their genetic material. Moreover, there should be an acknowledgement that women are perfectly capable of making informed decisions about donation and of considering the potential implications of participating in egg donation. This revised version was published online in June 2006 with corrections to the Cover Date.     

Using Questions to Improve Informed Consent Form Reading Behavior in Students

Previous research shows that students often do not read informed consent forms to understand their rights (Pederson, Neighbors, Tidwell, & Lostutter, 2011). Four hundred fifty-eight students participated in an advertised temperament study that actually measured whether they noticed a manipulation within the consent form. Answering five questions about the form raised the percentage of students noticing the manipulation in multiple settings; however, overall rates were low. Fewer than 10% of ethnic minority students noticed the manipulation. If the goal of consent forms in higher education remains an informed decision, these results indicate the need for increased interaction within the consent process.     

‚Mirroring‘ the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?

Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors’ participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important thematic issues of information are to be given to the biobank participants and how this information should be presented in the consent documents. For these purposes, we analyse consent documents from 14 biobanks in 11 countries for six ethically relevant issues: (1) model of consent, (2) scope of future research, (3) access to medical data, (4) feedback to the participants, (5) consent withdrawal, and (6) role of research ethics committee. In order to compare different trends of informing donors of human biological material and medical data, we interpret the six analysed issues in the context of respect to donor’s autonomy paradigm. Although the results of the paper reflect the heterogeneity of biobank consent document policies applied in different European countries, we uncovered some trends and suggested several examples of good practices to balance the interests of the donors with those of the researchers and future patients.     

Family therapy ‘lite’? How family counsellors conceptualise their primary care family work

A number of current developments in the field potentially provide opportunities for preventative relationship and family interventions to be integrated into primary care. In this context, it is important to understand what family counselling is and how it might differ from family therapy. Thus, this paper investigates how the service of one low-intensity family counselling provider, Relate, is conceptualised and practised by counsellors on the ground. Questions about practice were posed to five focus groups of family counsellors and these were analysed using thematic analysis. The findings suggest that Relate family counselling is seen as ‘family therapy lite’, with a flexible, eclectic and integrative use of concepts and techniques within a systemic framework. Implications of this conceptualisation of family counselling for training, practice and research are discussed.     

Informed Decision-Making in the Context of Prenatal Chromosomal Microarray

The introduction of chromosomal microarray (CMA) into the prenatal setting has involved considerable deliberation due to the wide range of possible outcomes (e.g., copy number variants of uncertain clinical significance). Such issues are typically discussed in pre-test counseling for pregnant women to support informed decision-making regarding prenatal testing options. This research study aimed to assess the level of informed decision-making with respect to prenatal CMA and the factor(s) influencing decision-making to accept CMA for the selected prenatal testing procedure (i.e., chorionic villus sampling or amniocentesis). We employed a questionnaire that was adapted from a three-dimensional measure previously used to assess informed decision-making with respect to prenatal screening for Down syndrome and neural tube defects. This measure classifies an informed decision as one that is knowledgeable, value-consistent, and deliberated. Our questionnaire also included an optional open-ended question, soliciting factors that may have influenced the participants’ decision to accept prenatal CMA; these responses were analyzed qualitatively. Data analysis on 106 participants indicated that 49% made an informed decision (i.e., meeting all three criteria of knowledgeable, deliberated, and value-consistent). Analysis of 59 responses to the open-ended question showed that “the more information the better” emerged as the dominant factor influencing both informed and uninformed participants’ decisions to accept prenatal CMA. Despite learning about the key issues in pre-test genetic counseling, our study classified a significant portion of women as making uninformed decisions due to insufficient knowledge, lack of deliberation, value-inconsistency, or a combination of these three measures. Future efforts should focus on developing educational approaches and counseling strategies to effectively increase the rate of informed decision-making among women offered prenatal CMA.     

HIV/AIDS and immigrant Cape Verdean women: Contextualized perspectives of Cape Verdean community advocates

This research explored Cape Verdean community advocates’ understandings of the structural and social realities that contribute to the increased HIV/AIDS risk of Northeastern U.S.-based immigrant Cape Verdean women. A community perspective informed the analysis of the multi-layered contextual barriers that these advocates identified as limiting the effectiveness of individual-level HIV/AIDS prevention and intervention models. Qualitative content analysis of interviews with nine community advocates revealed several thematic clusters including challenges to (1) perceived institutional and community realities; (2) traditional gender relations; and, (3) traditional ways of thinking. These findings challenge universalist cognitive-behavioral change models of HIV/AIDS prevention and intervention and are critically discussed to better understand the complex realities faced by Cape Verdean immigrant women. A liberatory community psychology perspective framed the research process and contributed to reconceptualizing HIV/AIDS risk as a community problem that requires interventions not simply at the individual and relational levels, but also at the structural level.     

POTENTIAL APPLICATIONS OF BEHAVIORAL DECISION RESEARCH TO TREATMENTS FOR DRUG ABUSE, RELATED RISKY BEHAVIORS, AND OTHER PROBLEMS:

Abstract— This commentary highlights potential applications of behavioral decision research to treatments for substance abuse and related risky behaviors. Some research questions are suggested to help determine how risk information developed with behavioral decision methods could be used with maximal impact to treat and prevent substance use The relevance of behavioral decision research treatments for other problems such as anxiety is briefly discussed. The important and direct applicability of behavioral decision methods to informed consent far research participants also is noted.     

Reducing the barriers to accessing psychological therapies for Bengali,Urdu, Tamil and Somali communities in the UK: some implications for training,policy and practice

The aim of this research was to investigate the feasibility of achieving Improving Access to Psychological Therapies (IAPT) for people from Black, Asian and Minority Ethnic (BAME) communities living in the UK, with specific reference to Bengali, Urdu, Tamil and Somali speaking communities. Focus groups were carried out with each of the communities to investigate how they conceptualise and experience ‘mental health issues’ and what they do when faced with what they regard as these issues. A thematic analysis of the data suggested that participants did not fully understand common conceptualisations about mental health issues, nor did they know how to seek mental health support. Implications of cultural barriers and recommendations for IAPT outcomes for the four communities are discussed.     

Diverse Perceptions of the Informed Consent Process: Implications for the Recruitment and Participation of Diverse Communities in the National Children’s Study

We examined the experiences, perceptions, and values that are brought to bear when individuals from different ethnic and cultural backgrounds consider participating in health research. Fifty-three women from Latino, Asian American, Middle Eastern, or Non-Latino, White backgrounds participated in seven English or Spanish focus groups facilitated by trained investigators using a standard protocol. Investigators described the National Children’s Study (NCS) and then asked questions to elicit potential concerns, expectations, and informational needs. Group sessions were audio-recorded, transcribed verbatim, and analyzed using qualitative thematic methods. A major theme that emerged during focus groups was participant self-identification as a member of a cultural group or community when raising issues that would influence their decision to participate in research. A related theme was the belief by some that communities may differ in the ease of participation in the NCS. Identified themes related to the informed consent process included perceived risks, anticipated burden, perceived benefits, informational needs, and decision-making strategies. Although themes were shared across groups, there were cultural differences within themes. Findings indicated that individuals from diverse backgrounds may have different perspectives on and expectations for the research process. To effectively recruit representative samples, it will be important to address a range of issues relevant for informed consent and to consider the impact of participation on both individuals and communities.     

A neurocognitive model of the ethical decision-making process: implications for study and practice

The field of business ethics is entrenched in a cognitive approach that portrays the ethical decision-making process as a completely deliberate and reasoned exercise. In light of growing concerns about the veracity of this approach, I build upon current knowledge of how the brain functions to present a neurocognitive model of ethical decision making. The model suggests that ethical decision making involves 2 interrelated yet functionally distinct cycles, a reflexive pattern matching cycle and a higher order conscious reasoning cycle, and thereby describes not only reasoned analysis, but also the intuitive and retrospective aspects of ethical decision making. The model sparks research in new areas, holds significant implications for the study of ethical decision making, and provides suggestions for improving ethical behavior in organizations.