Tissue donation to biobanks: a review of sociological studies

Collections of human tissue (biobanks) are thought to be an essential resource for biomedical research. Biobanks have, however, been a source of debate in both bioethics and sociology. In recent years this theorising has been supplemented with empirical research, including a significant body of qualitative research, into donors' experiences and attitudes. To date, this literature has not been synthesised. We report the findings of a review of qualitative literature regarding the ways in which lay people construct and experience the process of donation to biobanks. Our aim was to determine what the qualitative research literature tells us about the process of donating to biobanks, and how this can enrich existing insights from quantitative research and from theoretical sociology and bioethics. Qualitative research shows that donation to biobanks is a complex process shaped by donors' embeddedness in a number of social contexts; by complex relations of trust in biomedicine; and by the ambiguous status of human tissue. While these findings are theoretically and practically useful, current sociological theorising is very general. A more detailed and nuanced 'sociology of biobanking' is needed, and this might be best achieved by exploring specific theoretical questions in a variety of biobanking settings.     

We’re not in it for the money—lay people’s moral intuitions on commercial use of ‘their’ biobank

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing.     

Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty‐two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed‐method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.     

Factors important to psychosocial adjustment to cancer: a review of the evidence

Systematic observations have revealed that cancer patients experience a wide array of emotional reactions. Because of limited helping resources, as well as the possibility of prevention, it would be useful to identify those cancer patients at risk for the development of significant psychiatric difficulties and psychosocial maladjustment. Many investigators have proposed, but not substantiated factors which seem to be associated with such problems following cancer diagnosis. This report reviews clinically noted or theoretically-derived factors which have been tested empirically for relationships with various aspects of psychosocial adjustment. Certain specific cancer sites have been noted to be associated with psychosocial problems. A specific biological basis for psychiatric problems associated with certain diseases has been proposed for multiple myeloma, lung tumors and pancreatic cancer. A number of chemotherapy agents are now recognized as accounting for presumed psychiatric symptoms. While studies relating age, sex, marital or socioeconomic status with psychosocial problems have found no consistent associations, social support has been demonstrated as a significant factor in adjustment to cancer. Studies of the relation of adaptation and the patient's psychological situation such as degree of pessimism or anxiety, personality characteristics, prior experience with the death of a close friend or relative or religious beliefs have been inconclusive. Many studies have used measures of questionable external validity and others employed unvalidated subjective ratings. It is only recently that there are instruments considered reliable and valid for research in this area and even these instruments have not been extensively validated. Finally, this paper reviews several major design problems which have impaired identification of predictive variables and provides suggestions for future research.     

Hong Kong Chinese perceptions of the experience of unrelated bone marrow donation

This paper presents a qualitative perspective of the Chinese experience of unrelated bone marrow donation. A total population of 37 Chinese men and women, residing in Hong Kong who had donated bone marrow to an unrelated recipient were interviewed and asked their retrospective perceptions and experiences during the process of unrelated bone marrow donation. The majority was female (60%) and single (59.3%). The median age was 30.9 years. The main themes drawn from thematic content analysis included: association with bad and good fortune, religious concerns associated with complete bodies, barriers posed by the extended family, fulfilling personal identities linked to perceptions of altruism, reciprocity and generosity and the differences between the expectations and reality of the experience of bone marrow donation. These accounts indicate how, for Chinese populations, the act of body fluid donation cannot be isolated from the experiences of life-long immersion in the dominant social and cultural processes of the time. In addition, Confucian notions of the body, the power of body fluids to pollute, the importance of blood and bones as sources of vital energy and the process of bodily transference into the after life are highlighted. Furthermore, what is also identifiably Chinese is that donation is more of a self-fulfilling act than a social act with very little familial or social recognition being accorded in the public world. The conclusion highlights how donors entered into the decision to donate with little awareness of the long-term consequences. The process, however, was seen by the donors to be beneficial. A compelling argument is made for more educational and emotional support regarding the experience of bone marrow donation from Hong Kong's formal service providers.     

Hope and hoping in the talk of dying cancer patients

Hope is the subject of increasing research and discussion within the healthcare literature. However, although deemed of vital import to patient welfare, there is little examination of how hope features within patients' speech. This qualitative study presents the discursive properties of hope as it emerged unprompted during semi-structured interviews with 28 patients in the final phase of terminal cancer recruited from the oncology clinic of the Royal Adelaide Hospital, Australia. In the context of discussions about decision-making at the end of a terminal illness, when used as a noun, hope invariably referenced the medical domain--focussing either on the objective probability of medical cure (typically taking the negative form "there is no hope"), or the subjective possession of the patient, needed to fight their disease. Positioning the patient as relatively powerless and subject to external forces, this hope was most commonly associated with absolute solutions, and life-and-death stakes. Hope as a verb emphasised the patient's active engagement in life, identifying what was good and positive for them. It was used to assign responsibility to others, to indicate and establish solidarity or agreement between the speaker and others, effectively strengthening interpersonal ties between individuals. Through hoping, patients established connection with others and with the future. In the context of interactions between patients and clinical staff, we conclude that the use of hope-as-a-verb may have benefits, enabling the patient--even when dying--to focus on the positive, to connect to others, and to continue to engage with life.     

Die Sicherung der Nachhaltigkeit von Biobanken

Active research sites in biomedicine need professionally structured, sustainable biobanks that represent established resources and technology platforms across different locations and disciplines. Currently, the funding of research biobanks is not uniformly regulated, mainly because of the different focuses, services and concepts. On the other hand, the samples and associated data of biobanks gain significant value over time, and therefore their long-term storage should be envisaged right from the start.     

Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?

BACKGROUND: The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. METHODS: Cross-sectional survey. Postal questionnaires to a random sample of the general public in Sweden, 18-80 years of age (n = 6000) in October 2002 (response rate 49.4%; n = 2928). RESULTS: A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. CONCLUSIONS: The majority of the general public is willing to donate a sample to a biobank. The willingness is mainly driven by altruism, and depends on the public being well-informed and having trust in experts and institutions.     

Elderly hospice cancer patients' descriptions of their pain experiences.

A qualitative research design was used to identify and describe the pain experience of elderly hospice patients with cancer. Eleven participants over the age of 65 receiving hospice services from a for-profit hospice in east Texas were interviewed in their homes. On the basis of a constant-comparative method of analysis, participants identified: (a) multiple sites of pain; (b) hierarchy of pain; and (c) strategies used to decrease pain. Participants differentiated "physical" and "psychological" pain, based on the source of pain. Pain was described as a hierarchy of chronic, acute, and psychological pain, with psychological being the worst. Pharmacological and nonpharmacological strategies were used to decrease their "physical" pain, but participants perceived that there was little they could do about their "psychological" pain.     

From altruism to monetisation: Australian women's ideas about money,ethics and research eggs

We report the results of a qualitative study carried out in metropolitan Australia between 2009 and 2011 that canvassed the issue of payment for research oöcyte donation with participants drawn from three potential donor groups; fertility patients, reproductive donors and young, non-patient women. Research oöcytes are controversial tissues because women around the world have proved largely unwilling to donate them altruistically. In the ensuing international debate about procurement, the issue of money and its appropriate and inappropriate uses in tissue donation has taken centre stage. While there is now an abundance of expert commentary on this matter, there are almost no studies that probe this issue with potential donor populations. Our study asked the three groups of women about their understandings of altruistic, reimbursed, subsidised, compensated and paid donation for both reproductive and research eggs. We identify a resistance to the introduction of money into the sphere of reproductive donation, which the majority of respondents felt should remain an area of personalised gift relations. In the area of research donation we find a strong relationship between degrees of liquidity (the extent to which money is constrained or unconstrained) and a sense of ethical appropriateness. We also describe a culturally specific sense of fairness and equity among participants, associated with the relatively high public subsidisation of fertility treatment in Australia, which they used to benchmark their sense of appropriate and inappropriate uses of money. While the participant responses reflect the regulatory environment in Australia, particularly the absence of a US style market in reproductive oöcytes, they also make an important contribution to the global debate.     

Remapping the body: learning to eat again after surgery for esophageal cancer

Surgery for esophageal cancer offers the hope of cure but might impair quality of life. The operation removes tumors obstructing the esophagus but frequently leaves patients with eating difficulties, leading to weight loss. Maintaining or increasing body weight is important to many patients, both as a means of returning to "normal" and as a means of rejecting the identity of the terminal cancer patient, but surgery radically alters embodied sensations of hunger, satiety, swallowing, taste, and smell, rendering the previously taken-for-granted experience of eating unfamiliar and alien. Successful recovery depends on patients' learning how to eat again. This entails familiarization with physiological changes but also coming to terms with the social consequences of spoiled identity. The authors report findings from in-depth interviews with 11 esophageal cancer patients, documenting their experiences as they struggle to achieve a process of adaptation that is at once physiological, psychological, and social.     

Mitochondrial donation,patient engagement and narratives of hope

This article develops the sociology of hope and patient engagement by exploring how patients’ perceptions and actions are shaped by narratives of hope surrounding the clinical introduction of novel reproductive techniques. In 2015, after extensive public debates, the UK became the first country to legalise a mitochondrial donation technique aimed at preventing the transmission of inherited disorders. The article draws on the accounts of twenty‐two women of reproductive age who are at risk of having a child with mitochondrial disease and would be the potential target of the technique. We explore the extent to which our participants engaged with the public debates and how they accounted for their support of mitochondrial donation. We show that while the majority of our participants were in favour of legalisation, they did not necessarily wish to use the technique themselves. We found that hope was multi‐faceted, involving hope for self, hope for family and hope for society. We conclude by considering the implications of hope narratives for patients and families and the important but potentially limited role that patients can play as advocates for technology.     

Telling their stories, telling our stories: physicians' experiences with patients who decide to forgo or stop treatment for cancer

There is currently very little research on how physicians respond to patients with cancer who decide to forgo or stop medically recommended "curative" therapy. The purpose of this article is to report on a qualitative study with 12 oncology specialists in Israel and Australia that addresses this question. The findings indicate that physicians tend to construct patients and their decisions in terms of mutually exclusive categories that focus on curability of the disease, rationality of the patient's decision, and patients' personal attributes. Physicians' constructions of their experience focus on uncertainty and concern. Although contextual factors play a role in how physicians act in this situation, Israeli and Australian oncologists are remarkably similar in how they describe their own and their patients' experiences.     

‘My relationships have changed because I’ve changed’: biographical disruption,personal relationships and the formation of an early menopausal subjectivity

Early menopause (EM) or premature ovarian insufficiency (POI) can disrupt gendered and age-related expectations associated with perceived ‘normative’ biographies for young adult women, with implications for subjectivity and relationships. While previous qualitative research has concentrated on the impacts of EM/POI on biography and sense of self, in this article, we examine the enmeshment of personal relationships with the formation of early menopausal subjectivities. Drawing on research exploring concepts of ‘biographical disruption’ and personal relationships, and theoretical work on social norms and subject formation, we present findings from a narrative thematic analysis of 25 interviews with women diagnosed with spontaneous or medically induced EM/POI. We identify three main narrative ‘types’ of subjective and relational experience in response to the ‘disruption’ of EM/POI: interlude and continuity; disruption and adaptation; and disruption and ambivalence. Women’s accounts of their experience of EM/POI indicate that the formation of early menopausal selves is mediated by the extent to which women and those around them identify with gendered norms related to reproduction and age. Consistent with theoretical perspectives that consider the self as relationally produced, we argue that the subjective and relational dimensions of EM/POI are intertwined and must be understood in tandem.     

新冠肺炎疫情下儿童保健门诊家长心理体验及需求的定性研究

目的通过现象学研究,探索新冠肺炎疫情背景下儿童保健门诊家长心理体验及需求。方法采用半结构式深度访谈法和观察法,对17名儿童保健门诊的家长进行质性访谈,借助Nvivo 8软件,应用Colaizzi分析法和合众法对访谈收集到的资料进行整理与分析。结果新冠肺炎疫情背景下儿童保健门诊家长心理体验及需求共提炼出4个主题:对自身及家人身心健康的担忧、担心COVID-19对儿童学业的影响、预防意识的提升、对COVID-19知识和线上服务的需求。结论新冠肺炎疫情背景下儿童保健门诊家长有着焦虑、自感抑郁的心理体验,对COVID-19知识和线上服务的需求较大。因此,儿童保健医护人员应加强对家长心理的疏导,对家长进行个性化的知识宣教和育儿方面的指导,促进家长身心健康;医院应继续开展线上服务,满足家长各方面的需求。     

Blood and the public body: a study of UK blood donation and research participation

This paper draws on interview and ethnographic data to describe donor accounts of blood donation in England, and how this contrasts to their responses when invited to also participate in two associated public health research studies. Donor views about usual blood donation combine the general, if flexible, theme of altruism with powerful notions of the social collective, giving rise to the sense that they are making tangible, physical ties and constructing a social body through the act of donation. However, their accounts of research participation are more open and ambiguous. At the core of this is the sense that they do not know what exactly they are ‘giving’, since the research is ultimately about collecting information, rather than substance. Equally, the donor-participants are not sure who they are giving it to, since they have no sense of the social collective that potentially might benefit from the research. The paper argues that the concept of ‘the population’ in public health is not only a term that is alien and abstract for the blood donors, but increasingly is a post hoc category for large-scale epidemiological studies. As a result, rather than supporting the obvious assumption that individual bodies make up populations, in practice, particular population renderings determine the nature of individual bodies. In so doing, the need to address ideas of ‘the social’, as distinct from ‘the population’, is increasingly unnecessary in much of public health research.     

Labor market integration,immigration experience,and psychological distress in a multi-ethnic sample of immigrants residing in Portugal

Objectives: This study aims at examining how factors relating to immigrants’ experience in the host country affect psychological distress (PD). Specifically, we analyzed the association among socio-economic status (SES), integration in the labor market, specific immigration experience characteristics, and PD in a multi-ethnic sample of immigrant individuals residing in Lisbon, Portugal.

Design: Using a sample (n?=?1375) consisting of all main immigrant groups residing in Portugal’s metropolitan area of Lisbon, we estimated multivariable linear regression models of PD regressed on selected sets of socio-economic independent variables. A psychological distress scale was constructed based on five items (feeling physically tired, feeling psychologically tired, feeling happy, feeling full of energy, and feeling lonely).

Results: Variables associated with a decrease in PD are being a male (demographic), being satisfied with their income level (SES), living with the core family and having higher number of children (social isolation), planning to remain for longer periods of time in Portugal (migration project), and whether respondents considered themselves to be in good health condition (subjective health status). Study variables negatively associated with immigrants’ PD were job insecurity (labor market), and the perception that health professionals were not willing to understand immigrants during a clinical interaction.

Conclusion: The study findings emphasized the importance of labor market integration and access to good quality jobs for immigrants’ psychological well-being, as well as the existence of family ties in the host country, intention to reside long term in the host country, and high subjective (physical) health. Our research suggests the need to foster cross-national studies of immigrant populations in order to understand the social mechanisms that transverse all migrant groups and contribute to lower psychological well-being.     

Understanding the Psychological Distress of Food Insecurity: A Qualitative Study of Children’s Experiences and Related Coping Strategies

BackgroundFood insecurity, a condition of inadequate household food availability, affects 15.7% of US households with children. Food insecurity is generally believed to affect the quantity and quality of food consumed. However, an understudied but important aspect of the experience of food insecurity is psychological distress.ObjectiveTo critically explore the psychological distress associated with children’s food insecurity using children’s own reports of their experiences.DesignIn-depth qualitative interviews conducted with children to better understand the psychological distress associated with food insecurity.Participants/settingSixty children (aged 7 to 14 years) were recruited from the San Francisco Bay Area. Children were eligible in the case that they spoke English fluently and their parent reported any experience of household food insecurity during the past year.ResultsChildren discussed six themes related to the psychological distress associated with food insecurity: worrying about not having enough food, worrying about their parents’ well-being, anger and frustration about not having enough food, embarrassment about their family’s food situation, strain on the family’s dynamics due to food insecurity, and sadness over not having enough food. After describing their experiences, children described strategies they employed to tolerate or cope with food insecurity, including distracting from or using their imagination to cope with food insecurity, increasing tolerance of their family’s food situation, and appreciating their parents for providing food and resources.ConclusionsFood insecurity contributes to children’s psychological distress. Given the known effects of chronic stress in childhood, the psychological distress of food insecurity may represent an important mechanism by which food insecurity adversely influences children’s growth and development and deserves investigation in future studies.     

Disclosing clinical adverse events to patients: can practice inform policy?

Objectives To understand patients’ and health professionals’ experience of Open Disclosure and how practice can inform policy. Background Open Disclosure procedures are being implemented in health services worldwide yet empirical evidence on which to base models of patient–clinician communication and policy development is scant. Design, setting and participants A qualitative method was employed using semi‐structured open‐ended interviews with 154 respondents (20 nursing, 49 medical, 59 clinical/administrative managerial, 3 policy coordinators, 15 patients and 8 family members) in 21 hospitals and health services in four Australian states. Results Both patients and health professionals were positive about Open Disclosure, although each differed in their assessments of practice effectiveness. We found that five major elements influenced patients’ and professionals’ experience of openly disclosing adverse events namely: initiating the disclosure, apologizing for the adverse event, taking the patient’s perspective, communicating the adverse event and being culturally aware. Conclusions Evaluating the impact of Open Disclosure refines policy implementation because it provides an evidence base to inform policy. Health services can use specific properties relating to each of the five Open Disclosure elements identified in this study as training standards and to assess the progress of policy implementation. However, health services must surmount their sensitivity to revealing the extent of error so that research into patient experiences can inform practice and policy development.