Motivating Donors to Genetic Research? Anthropological Reasons to Rethink the Role of Informed Consent

In this article we explore the contribution from social anthropology to the medical ethical debates about the use of informed consent in research, based on blood samples and other forms of tissue. The article springs from a project exploring donors’ motivation for providing blood and healthcare data for genetic research to be executed by a Swedish start-up genomics company. This article is not confined to empirical findings, however, as we suggest that anthropology provides reason to reassess the theoretical understanding of autonomy as generally defined by Beauchamp and Childress. Careful consideration of the trust expressed by donors through the act of donation, furthermore, suggests that there is reason to redirect the ethical scrutiny from informed consent to issues concerning institutional arrangements and social responsibility. In particular, we suggest that an anthropological approach could facilitate a reconsideration of the political implications of using informed consent as a regulatory practice in tissue-based research.     

Impact of hepatitis a in Siena: A “traveller's disease”?

Over a period of seven years (from 1980 to 1987) 58 acute viral hepatitis A cases were admitted to the Departments for Infectious Diseases. This number represents 10.76% of all viral hepatitis patients. Most of the patients had travelled to foreign countries or to areas in Italy with high hepatitis A virus (HAV) circulation. An assessment of specific immunization against HAV in normal healthy people aged 1–60, performed by ELISA, showed a very low number of sero-positive subjects.The disappearance of HAV in Italy, which is similar to other western European countries, is probably due to the improved socio-economical conditions; the imported cases seem to have little impact on public health.Corresponding author.     

Illustrating a “consequential” shift in the study of health inequalities: a decomposition of racial differences in the distribution of body mass

Purpose

We present a conceptual introduction to “distributional inequalities”—differences in distributions of risk factors or other outcomes between social groups—as a consequential shift for research on health inequalities. We also review a companion analytical methodology, “distributional decomposition”, which can assess the population characteristics that explain distributional inequalities.

Sexuality in Stroke Care: A Neglected Quality of Life Issue in Stroke Rehabilitation? A Pilot Study

Although there is a substantial body of literature on the physical and psychosexual consequences of stroke, there is a paucity of empirical studies on the experiences of rehabilitation professionals in addressing sexuality issues with patients during the rehabilitation process. This is the first small-scale pilot study in Northern Ireland, informed by a comprehensive literature review, which explores the experiences of health and social care professionals in addressing sexuality issues with patients and their perceptions of the training they require in this area of stroke rehabilitation. Questionnaire survey data were collected from community and hospital based stroke professionals in a Health and Social Services Trust in Northern Ireland. The study groups comprised nurses, doctors, physiotherapists, occupational therapists, speech and language therapists and social workers. The findings revealed that although the majority of staff had been asked for advice on sexuality issues during rehabilitation, most of them had received no training in this aspect of stroke rehabilitation since joining stroke services. The findings suggest that all rehabilitation professionals need to become more knowledgeable about sexuality issues in stroke care and could benefit from further education and training in comprehensive sexual health care.     

Women’s Preferences for the Location of Abortion Services: A Pilot Study in Two Chicago Clinics

Between July and December 2006, 209 women at a university-based primary care center and a freestanding abortion clinic completed a verbally administered questionnaire in which they were asked their preference for the location of early abortion services. Sixty women seeking primary care services at the university-based clinic and 149 women seeking first-trimester abortion services at an abortion clinic completed the questionnaire. Sixty-seven percent (67%) of women surveyed at the university-based primary care facility and 69% at the abortion clinic indicated a preference for abortion services from their regular health care provider. A statistically significant association (P = 0.002) was found between comfort speaking with a regular health care provider about pregnancy prevention and preference for the provision of abortion services from a regular health care provider. Women may feel more comfortable undergoing an early abortion procedure with a provider with whom they have an established relationship. The integration of early abortion services into primary care practice may increase continuity of care among women seeking an abortion.     

Stealing the Smile from My Child's Face: A Preliminary Evaluation of the “Being a Dad” Programme in a Northern Ireland Prison

Children who have a parent in prison are a vulnerable group. Research suggests that such children experience a range of poor outcomes in relation to well-being, education and relationships. These outcomes are mediated by a range of factors including contact with the incarcerated parent. Similarly, prisoners who maintain contact with their families are less likely to reoffend. Evidence to support the importance of the prison system recognising and helping to maintain parenting roles for parents in prison is beginning to emerge, and this investigation sought to investigate fathers' views of an innovative parenting intervention implemented in Her Majesty's Prison Maghaberry centred around the Being a Dad programme. Eighteen fathers completed the programme. Data collected after participation indicated that fathers reported a range of positive outcomes including improved understanding of child behaviour and development and improved communication quality. Implications for further parenting support within the prison population are discussed.     

Unjustified Discrimination: Is the Moratorium on the use of Genetic Test Results by Insurers a Contradiction in Terms?

This paper considers the legal position of genetic test results in insurance law in England and Wales. The strict position is that this information is material to the decision of the insurer to offer insurance cover and should be disclosed by insurance applicants. However, the British Government and the Association of British Insurers have agreed to a moratorium on the use of genetic test results in insurance, which will run until 2014. The moratorium prohibits unfavourable treatment of insurance clients on their basis of their genetics, unless it can be justified. In this paper, I consider the notion of genetic discrimination and ask whether it is possible to justify the concept in such a way that its existence should be accepted. The paper suggests that the insurance industry and the general public have different viewpoints on the concept of discrimination, and that this causes much of the disagreement over the issue of using genetic test results in insurance.     

A Pilot Study on the Metabolic Impact of Mediterranean Diet in Type 2 Diabetes: Is Gut Microbiota the Key?

The Mediterranean diet (MD) has been recommended for type 2 diabetes (T2D) treatment. The impact of diet in shaping the gut microbiota is well known, particularly for MD. However, the link between MD and diabetes outcome improvement is not completely clear. This study aims to evaluate the role of microbiota modulation by a nonpharmacological intervention in patients with T2D. In this 12-week single-arm pilot study, nine participants received individual nutritional counseling sessions promoting MD. Gut microbiota, biochemical parameters, body composition, and blood pressure were assessed at baseline, 4 weeks, and 12 weeks after the intervention. Adherence to MD [assessed by Mediterranean Diet Adherence Screener (MEDAS) score] increased after the intervention. Bacterial richness increased after 4 weeks of intervention and was negatively correlated with fasting glucose levels and Homeostatic Model Assessment for Insulin Resistance (HOMA-IR). Prevotella to Bacteroides ratio also increased after 4 weeks. In contrast, glycated haemoglobin (HbA1c) and HOMA-IR were only decreased at the end of study. Alkaline phosphatase activity was assessed in fecal samples and was negatively correlated with HbA1c and positively correlated with bacterial diversity. The results of this study reinforce that MD adherence results in a better glycemic control in subjects with T2D. Changes in gut bacterial richness caused by MD adherence may be relevant in mediating the metabolic impact of this dietary intervention.     

Halting the Metabolic Complications of Antipsychotic Medication in Patients with a First Episode of Psychosis: How Far Can We Go with the Mediterranean Diet? A Pilot Study

Patients with first-episode psychosis (FEP) often adopt unhealthy dietary patterns, with a risk of weight gain and metabolic and cardiovascular disease. In 21 FEP patients receiving nutritional intervention based on the Mediterranean diet (MedDiet), we explored differences in anthropometric and biometric parameters, according to their antipsychotic (AP) medication: AP1, associated with a lower risk, or AP2, associated with a higher risk of weight gain and metabolic complications. The blood biochemical profile was recorded before and after dietary intervention, and dietary habits and body composition were monitored for six months. Following intervention, all of the patients recorded significant increases in the consumption of fruit and vegetables and decreases in red meat and poultry consumption, with closer adherence to the MedDiet and a reduction in the daily intake of calories, carbohydrates, and sodium. Vegetable consumption and energy, protein, and carbohydrate intake were lower in AP1 patients than in AP2 patients. There was no significant weight gain overall. A reduction was demonstrated in total and LDL cholesterol, sodium, urea, and iron (lower in AP1 patients). It was evident that AP medication affected blood levels of lipids, urea, and iron of FEP patients, but MedDiet nutritional intervention led to a significant improvement in their eating habits, with a restriction in weight gain and a decrease in blood sodium and urea.     

“Sleeping in a boundary” constructing the meaning of health in a refugee camp

Sociopolitical discourses surrounding refugee migration and resettlement are characterized by divisiveness, assumptions, and fear. When these discussions are grounded in the narratives of women refugees a deeper understanding of issues impacting health, family, and resilience emerges. We examine how 26 Karen women living in camps along the Thai-Burma border construct meaning around health, in relation to livelihoods. Through directed content analysis, themes emerged: precursors to achieving health, health and livelihoods, and position and agency. Women identified barriers and facilitators to health, identified a dynamic relationship between health and livelihoods, and described their position and agency in the systems they navigate.     

Consent: what is the role of health care workers?

This article considers legal and ethical aspects of consent, as well as the need for consent to be a communication process that informs patients about procedures. Recent examinations of the use of agents (such as nurses and allied health professionals) in securing consent are discussed. While there is a clear role for nonphysician health care workers in advocating for the patient and assuring that consent has been secured; their actual role in securing consent in the absence of a physician is less clear.