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Risk notification is part of a focus on preventive medicine that is dominant in contemporary Western biomedicine. Genomics has forecasted great advances in alleviating disease and prolonging human life, moving from a reactive to a preventative practice. However, in doing so, genomics redraws boundaries, potentially classifying all people as possible carriers of malfunctioning genes. This chapter presents a critical review of the practice of ‘risk notification’ as undertaken by familial cancer genetic testing services, focusing on the right to be informed or not to be informed and implications of knowing.

With backgrounds in anthropology, psychology and public health, the authors draw upon literature around risk notification from a range of disciplines.

In the context of familial cancer, clients may be asked to provide contact information for biological family members to inform them of their potential genetic risk. Through these processes a number of tensions and issues may emerge that relate to fundamental bioethical principles. The ability and decision whether to know, or conversely, to not know, is ethically fraught. We consider the roles and rights of family members and clients, as well as the broader goal of population health.

While much attention has been devoted to clients’ right to know in the context of medical research and treatment, relatively little work has examined the right not to know and adverse consequences of knowing. This review addresses concerns which have rarely been critically examined and debated in the context of risk notification of biological family members.

This study contributes to the understanding of the health effects of pesticides exposure and of how pesticides have been and should be regulated.

This study presents literature reviews for the period 2000–2013 on (i) the health effects of pesticides and on (ii) preference valuation of health risks related to pesticides, as well as a discussion of the role of benefit-cost analysis applied to pesticide regulatory measures.

This study indicates that the health literature has focused on individuals with direct exposure to pesticides, i.e. farmers, while the literature on preference valuation has focused on those with indirect exposure, i.e. consumers. The discussion highlights the need to clarify the rationale for regulating pesticides, the role of risk perceptions in benefit-cost analysis, and the importance of inter-disciplinary research in this area.

This study relates findings of different disciplines (health, economics, public policy) regarding pesticides, and identifies gaps for future research.

The discovery of the BRCA1 and BRCA2 genes has facilitated the construction of a new group of women referred to as “previvors” – individuals who are survivors of a predisposition to cancer but who are not presently ill. These “previvors” constitute the first generation of women faced with the option to make preventative health choices based on this kind of genetic information. Therefore, this research examines how young BRCA positive women negotiate the medicalization of their bodies based on their new “potentially ill” status. Analyzing the posts in an online forum specifically for “young previvors,” the findings indicate that the majority share an “anything's better than cancer” mantra, suggesting that fear of death largely outweighs all other fears or concerns. Consequently, asserting control by taking preventative action is considered a mechanism for quelling the fear, uncertainty, and stress associated with being a BRCA gene carrier. Constructed as a medical diagnosis, carrying the BRCA mutation is consequently perceived as requiring a corresponding medical treatment. As such, despite the connection these women describe feeling with the “parts that make them a woman,” they appear to believe that they must undergo prophylactic surgery and disassociate from their bodies in order to save their lives. Ultimately, they convince themselves to view their breasts and ovaries simply as nonessential organs, rather than as core components of their feminine, sexual, and reproductive identities.

To examine the lived experiences of the biological adult daughters of women with breast cancer.

Family systems theory and phenomenology were used to guide this exploratory, qualitative study. Qualitative data were collected via one-time, semi-structured interviews with adult daughters of women with breast cancer.

Predominant themes included: close mother–daughter relationships, untimely disclosure of information, attentive fathers, optimistic outlooks, and influences on participants’ intimate relationships. Perceived strong familial and intimate relationships prior to breast cancer diagnosis helped ensure that mother–daughter relationships would remain strong, or even improve. Fathers’ attentiveness to mothers was pivotal in determining positive and negative attributes in daughters’ own intimate relationships.

Based on the findings from this study, family scientists and healthcare professionals may have a better understanding of the patients’ young adult daughters’ concerns throughout breast cancer treatment and follow up.

Daughters may be at a loss when their mothers are diagnosed with breast cancer. Healthcare professionals can be equipped to recognize these signs when meeting with patients and families, offer suggestions for family members’ coping, and encourage daughters to consider their own breast cancer risk and screening.

This study will provide a new insight into the experiences of daughters of women with breast cancer, and help family and health professionals understand how to support the relatives of breast cancer patients.

This chapter focuses on the differences that younger, middle-aged, and older women with breast cancer experience, particularly in health knowledge and treatment. These differential experiences, in part, stem from our youth oriented culture. This ideology extends into medicine and can affect day-to-day medical practice. Differential experiences are, therefore, likely to result in inequality and disparity in health and in healthcare. It is argued that older women are less empowered than their younger counterparts to display the same degree of agency. This analysis has important implications for health care professionals in the treatment of older women with breast cancer.

Purpose: We respond to a call for studies of “embodied experiences of stigma in context” by investigating how transgender embodiment shapes perceived needs for access to and experiences of “sex-specific” cancer screenings (SSCS) (e.g., breast and prostate exams, Pap smears) in the North American healthcare system.

Design/Methodology/Approach: We analyze data from semistructured interviews with a diverse sample of 35 transgender-identified adults. Based on thematic narrative analysis, we explore four themes in relation to embodiment: discrimination; discomfort and hyperawareness of genitalia; strategic reframing and active management; and SSCS health care encounters as positive and gender affirming.

Findings: In relation to SSCS, transgender individuals experience discrimination, do emotion work, and actively manage situations to obtain needed health care, and sometimes forego care because barriers are insurmountable. Health care providers' responses to transgender embodiment can disrupt health care encounters, but they can also facilitate access and create opportunities for affirmation, agency, advocacy, and new forms of interaction. Embodiment- and gender-affirming interactions with health care providers, which varied by gender, emerged as key influences on participants' experiences of SSCS.

Research Limitations/Implications: Our sample primarily includes binary gender-identified individuals, and while our interview guide covered many topics, the SSCS question did not explicitly reference testicular exams.

Practical Implications: Cancer prevention and detection Cancer prevention and detection require health care professionals who are prepared for differently embodied persons. Preventive cancer screenings are not “sex-specific”; they are relevant to individuals with medically necessary needs regardless of gender identity or embodiment.

Social Implications

Originality/Value: Few medical sociologists have focused on transgender embodiment. Findings enhance our understanding of how transgender embodiment and minority stress processes influence access to needed SSCS.

This brief chapter explores my experiences with music and death throughout my cancer treatment. Though I constantly confronted my mortality throughout my cancer treatment, music also helped to distract me from unpleasant, lengthy or boring treatments, as well as helping me to process my feelings about my own mortality. It thus served two distinct purposes, both focusing my mind on death and pain and distancing me from it.

In this chapter we explore some of the intriguing questions raised by contaminated communities. Is there a connection between exposure to environmental hazards and psychological distress? If yes, how best can it be measured? What kinds of psychological problems are aggravated by this kind of life stress? How do we know that victims are truly experiencing increased problems such as anxiety, depression and fears about their health?

Nutrition, as a science, is poorly understood, both professionally and publicly. The confusion that surrounds this science makes it very difficult, if not impossible, to formulate public health policy, which creates opportunities for political manipulation and control. Nutrition, for a century or more, has been variously described as a summation of the physiological and biochemical properties of individual nutrients in food rather than the whole food itself. This infers that isolated nutrients in supplements will function in the same way as nutrients in food. It also infers that removing or minimizing “undesirable” nutrients from food will make the food more healthful. This arises from the highly reductionist way that we focus on individual nutrients minus their natural context, both the context within the foods of which they are a part and the context within biological systems where they function. The shortcomings of this belief system may be illustrated by hugely costly mistakes made in the past, even more than a century ago, that corrupt current practices. Such mistakes have become so embedded in the contemporary narrative on nutritional science, both fundamentally and practically, that we fail to recognize the damage they continue to cause.

Alternatively, when nutritional effects are considered more within their natural contexts, that is, more wholistically, then it helps to explain, for example, the remarkable ability of nutrition, as provided by a whole food plant-based diet, to prevent even to cure varied types of cardiovascular disease. Furthermore, the breadth of this nutritional effect for a wide variety of illnesses and diseases suggests that nutrition, properly provided by a whole food plant-based diet, is more efficacious than a combination of all the contemporary pills and procedures combined. It also suggests that genetic determinism is not the explanation for disease that is widely advanced. And finally, among still more consequences, there are many societal outcomes that can be substantially mitigated, including the escalating cost of health care and the dangerously increasing array of destructive practices that damage the environment. Many of the momentous health, economic, environmental and sociopolitical problems currently faced may be traced to a misunderstanding of the effects of food and nutrition. The task therefore is how to bring this message to the attention of a public who for too long have gradually adopted flawed food production and healthcare systems that are on the verge of collapse, threatening the collapse of entire societies as we know them. More specifically, a public and professional dialog on the meaning of nutrition, especially its wholistic properties, is desperately needed, especially in medical schools where nutrition as a science is almost totally ignored.

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.