Organ donation and transplantation: the paradox of gifting and dis/embodiment

Since the 1950's, procuring organs for cadaveric transplantation has been based around a "gift of life" discourse, institutionalised through the carrying of donor cards/driving licence or registration on the NHS Organ Donor Register. Yet regardless of whether, or how, the deceased recorded their wishes to donate, their next-of-kin are always asked if organs can be removed. Little is known about the reasons families give for refusing or agreeing to an organ donation request. In order to identify the circumstances, in which an organ donation request is more likely to be accepted or refused by the family of a brain stem dead individual, eighteen semi-structured interviews were carried out in various areas of Scotland, in order to ascertain donor and non-donor relatives' beliefs, attitudes and experiences. The findings suggest that wider cultural beliefs embedded in society about the value of gifting, death and the body are brought to the specific context of an organ donation request. The interactions between these values and other factors, such as familial and hospital support and dynamics, and the perceived value of the outcome from donation, which affect whether families will donate or not. The findings of such an investigation will have obvious policy implications for those interested in increasing the present UK organ procurement rate, and can also inform debates about the merits of introducing alternative systems. However, a study of organ donation and transplantation can also provide the sociologist with a unique insight into several engaging areas of sociological interest: modern gift practices (including altruism and social exchange theory), the way meanings are constructed onto dead bodies by different groups, how and when death is defined, and finally, how individuals view the relationship between personal, social and corporeal identity

Outcomes following small bowel obstruction due to malignancy in the national audit of small bowel obstruction

Introduction Patients with cancer who develop small bowel obstruction are at high risk of malnutrition and morbidity following compromise of gastrointestinal tract continuity. This study aimed to characterise current management and outcomes following malignant small bowel obstruction. Methods A prospective, multicentre cohort study of patients with small bowel obstruction who presented to UK hospitals between 16th January and 13th March 2017. Patients who presented with small bowel obstruction due to primary tumours of the intestine (excluding left-sided colonic tumours) or disseminated intra-abdominal malignancy were included. Outcomes included 30-day mortality and in-hospital complications. Cox-proportional hazards models were used to generate adjusted effects estimates, which are presented as hazard ratios (HR) alongside the corresponding 95% confidence interval (95% CI). The threshold for statistical significance was set at the level of P ≤ 0.05 a-priori. Results 205 patients with malignant small bowel obstruction presented to emergency surgery services during the study period. Of these patients, 50 had obstruction due to right sided colon cancer, 143 due to disseminated intraabdominal malignancy, 10 had primary tumours of the small bowel and 2 patients had gastrointestinal stromal tumours. In total 100 out of 205 patients underwent a surgical intervention for obstruction. 30-day in-hospital mortality rate was 11.3% for those with primary tumours and 19.6% for those with disseminated malignancy. Severe risk of malnutrition was an independent predictor for poor mortality in this cohort (adjusted HR 16.18, 95% CI 1.86 to 140.84, p = 0.012). Patients with right-sided colon cancer had high rates of morbidity. Conclusions Mortality rates were high in patients with disseminated malignancy and in those with right sided colon cancer. Further research should identify optimal management strategy to reduce morbidity for these patient groups

National prospective cohort study of the burden of acute small bowel obstruction

Background Small bowel obstruction is a common surgical emergency, and is associated with high levels of morbidity and mortality across the world. The literature provides little information on the conservatively managed group. The aim of this study was to describe the burden of small bowel obstruction in the UK. Methods This prospective cohort study was conducted in 131 acute hospitals in the UK between January and April 2017, delivered by trainee research collaboratives. Adult patients with a diagnosis of mechanical small bowel obstruction were included. The primary outcome was in‐hospital mortality. Secondary outcomes included complications, unplanned intensive care admission and readmission within 30 days of discharge. Practice measures, including use of radiological investigations, water soluble contrast, operative and nutritional interventions, were collected. Results Of 2341 patients identified, 693 (29·6 per cent) underwent immediate surgery (within 24 h of admission), 500 (21·4 per cent) had delayed surgery after initial conservative management, and 1148 (49·0 per cent) were managed non‐operatively. The mortality rate was 6·6 per cent (6·4 per cent for non‐operative management, 6·8 per cent for immediate surgery, 6·8 per cent for delayed surgery; P = 0·911). The major complication rate was 14·4 per cent overall, affecting 19·0 per cent in the immediate surgery, 23·6 per cent in the delayed surgery and 7·7 per cent in the non‐operative management groups (P < 0·001). Cox regression found hernia or malignant aetiology and malnutrition to be associated with higher rates of death. Malignant aetiology, operative intervention, acute kidney injury and malnutrition were associated with increased risk of major complication. Conclusion Small bowel obstruction represents a significant healthcare burden. Patient‐level factors such as timing of surgery, acute kidney injury and nutritional status are factors that might be modified to improve outcomes

"We only did it because he asked us": Gendered accounts of participation in a population genetic data collection

This article draws upon findings from an interview study with twenty-three families about participation in a large-scale population genetic database called, "Generation Scotland: The Scottish Family Health Study" (GS: SFHS). GS: SFHS aspires to become a DNA identification vehicle for the discovery of genetic contributions to diseases that affect the Scottish population e.g., cancer, heart disease and mental illness. Little is known about why families invited to take part in this type of research do so, especially when a family member is acting as a 'proxy' recruiter and is healthy with no known genetic (or otherwise) disease. Who will agree to be such a 'proxy recruiter' (or 'proband'), who GS: SFHS will recruit and why has been shown to be dependent on the existence of family disease, proband use of indirect and direct coercion, and the status of family relationships more generally. This study adds to these findings demonstrating that participation is limited by family history affecting the numbers of family members who can be recruited and enhanced by gender affecting who will be recruited. Although not mutually exclusive, the reasons for participation by probands were tied to leaving a 'healthy legacy,' whereas for the family members it was because they were asked and felt obliged to or were persuaded to by the proband. This research concludes: 1) biology is a choice not a given; 2) yet the biological basis of family relationships can give rise to a gendering of recruitment to the clinical study; and 3) women continue to be 'kin-keepers'.Scotland Proband Population genetic data collections Participation Gender Genetics Health Family UK

Generation Scotland: the Scottish Family Health Study; a new resource for researching genes and heritability

Background: Generation Scotland: the Scottish Family Health Study aims to identify genetic variants accounting for variation in levels of quantitative traits underlying the major common complex diseases (such as cardiovascular disease, cognitive decline, mental illness) in Scotland. Methods/Design: Generation Scotland will recruit a family-based cohort of up to 50,000 individuals (comprising siblings and parent-offspring groups) across Scotland. It will be a six-year programme, beginning in Glasgow and Tayside in the first two years (Phase 1) before extending to other parts of Scotland in the remaining four years (Phase 2). In Phase 1, individuals aged between 35 and 55 years, living in the East and West of Scotland will be invited to participate, along with at least one (and preferably more) siblings and any other first degree relatives aged 18 or over. The total initial sample size will be 15,000 and it is planned that this will increase to 50,000 in Phase 2. All participants will be asked to contribute blood samples from which DNA will be extracted and stored for future investigation. The information from the DNA, along with answers to a life-style and medical history questionnaire, clinical and biochemical measurements taken at the time of donation, and subsequent health developments over the life course (traced through electronic health records) will be stored and used for research purposes. In addition, a detailed public consultation process will begin that will allow respondents' views to shape and develop the study. This is an important aspect to the research, and forms the continuation of a long-term parallel engagement process. Discussion: As well as gene identification, the family-based study design will allow measurement of the heritability and familial aggregation of relevant quantitative traits, and the study of how genetic effects may vary by parent-of-origin. Long-term potential outcomes of this research include the targeting of disease prevention and treatment, and the development of screening tools based on the new genetic information. This study approach is complementary to other population-based genetic epidemiology studies, such as UK Biobank, which are established primarily to characterise genes and genetic risk in the population.Publisher PDFPeer reviewe

Generation Scotland: the Scottish Family Health Study; a new resource for researching genes and heritability

Background: Generation Scotland: the Scottish Family Health Study aims to identify genetic variants accounting for variation in levels of quantitative traits underlying the major common complex diseases (such as cardiovascular disease, cognitive decline, mental illness) in Scotland.Methods/Design: Generation Scotland will recruit a family-based cohort of up to 50,000 individuals (comprising siblings and parent-offspring groups) across Scotland. It will be a six-year programme, beginning in Glasgow and Tayside in the first two years (Phase 1) before extending to other parts of Scotland in the remaining four years (Phase 2). In Phase 1, individuals aged between 35 and 55 years, living in the East and West of Scotland will be invited to participate, along with at least one (and preferably more) siblings and any other first degree relatives aged 18 or over. The total initial sample size will be 15,000 and it is planned that this will increase to 50,000 in Phase 2. All participants will be asked to contribute blood samples from which DNA will be extracted and stored for future investigation. The information from the DNA, along with answers to a life-style and medical history questionnaire, clinical and biochemical measurements taken at the time of donation, and subsequent health developments over the life course (traced through electronic health records) will be stored and used for research purposes. In addition, a detailed public consultation process will begin that will allow respondents' views to shape and develop the study. This is an important aspect to the research, and forms the continuation of a long-term parallel engagement process.Discussion: As well as gene identification, the family-based study design will allow measurement of the heritability and familial aggregation of relevant quantitative traits, and the study of how genetic effects may vary by parent-of-origin. Long-term potential outcomes of this research include the targeting of disease prevention and treatment, and the development of screening tools based on the new genetic information. This study approach is complementary to other population-based genetic epidemiology studies, such as UK Biobank, which are established primarily to characterise genes and genetic risk in the population.</p