Non-Invasive Prenatal Testing is a technology which provides information about fetal genetic characteristics very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by studying the (...) use of NIPT and emerging policy in the province of Ontario, Canada. Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area. (shrink)

This narrative ethics exploration stems from my happy prostate-specific antigen story, though it should not have been, as I annually refuse my family physician’s recommendation to purchase PSA screening. The reason for my refusal is I teach ethics to medical students and of course must walk the talk, and PSA screening is not publicly funded in the province of Ontario, Canada. In addition, I might have taken false comfort in ‘but all you need is a good index finger’ to detect (...) prostate cancer, expounded by a senior physician at a national medical conference in 2010, and applauded by the large audience of physicians. I was compelled to begin this exploration out of survivor guilt, although I will not be a survivor for long, and as a mea culpa to the men similarly situated to me in having late diagnosis of prostate cancer, aggressive tumours and multiple metastases, but who unlike me are dead because they did not experience the physician–educator-based exceptionisms and coincidences that permit me to still be alive. Although my PSA story will always be a happy story, even when my life ends in a few years, the initiation of public funding of PSA screening for all men over 50 would make my PSA story an even happier story. (shrink)

This narrative ethics exploration stems from my happy prostate-specific antigen story, though it should not have been, as I annually refuse my family physician’s recommendation to purchase PSA screening. The reason for my refusal is I teach ethics to medical students and of course must walk the talk, and PSA screening is not publicly funded in the province of Ontario, Canada. In addition, I might have taken false comfort in ‘but all you need is a good index finger’ to detect (...) prostate cancer, expounded by a senior physician at a national medical conference in 2010, and applauded by the large audience of physicians. I was compelled to begin this exploration out of survivor guilt, although I will not be a survivor for long, and as a mea culpa to the men similarly situated to me in having late diagnosis of prostate cancer, aggressive tumours and multiple metastases, but who unlike me are dead because they did not experience the physician–educator-based exceptionisms and coincidences that permit me to still be alive. Although my PSA story will always be a happy story, even when my life ends in a few years, the initiation of public funding of PSA screening for all men over 50 would make my PSA story an even happier story. (shrink)

Public attention on embryo research has never been greater. Modern reproductive medicine technology and the use of embryos to generate stem cells ensure that this will continue to be a topic of debate and research across many disciplines. This multidisciplinary book explores the concept of a 'healthy' embryo, its implications on the health of children and adults, and how perceptions of what constitutes child and adult health influence the concept of embryo 'health'. The concept of human embryo health is considered (...) from preconception to pre-implantation genetic diagnosis to recent foetal surgical approaches. Burgeoning capacities in both genetic and reproductive science and their clinical implications have catalysed the necessity to explore the concept of a 'healthy' embryo. The authors are from five countries and 13 disciplines in the social sciences, humanities, biological sciences and medicine, ensuring that the book has a broad coverage and approach. (shrink)

With the cure rate for many pediatric malignancies now between 70% and 90%, infertility becomes an increasingly important issue. Strategies for preserving fertility in girls and adolescent women occur in two distinct phases. The first phase includes oophorectomy and cryopreservation of ovarian cortex slices or individual oocytes; ultrasound-guided needle aspiration of oocytes, with or without in vitro maturation, followed by cryopreservation; and ovarian autografting to a distant site. The second phase occurs if the woman chooses to pursue pregnancy, and includes (...) IVM of the oocytes, followed by in vitro fertilization and transfer of any created embryos to the woman's uterus. For ovarian autografting, the woman would undergo menotropin ovarian stimulation and retrieval of matured oocytes. The ethical challenges with each of these phases are many of fertility preservation and include issues of informed choice. The lack of proven benefit with these strategies and the associated potential physical and psychological harms require careful attention to the key elements of informed choice, which include decisional capacity, disclosure, understanding and voluntariness, and to the benefits of in-depth counseling to promote free and informed choice at a time that is emotionally difficult for the decision makers. (shrink)

The purpose of this study was to explore the views of members of the general public regarding ethical issues in adult predictive genetic testing. The literature pertaining to ethical issues regarding to adult predictive genetic testing is largely restricted to the views of ‘experts’ who have emphasized informed consent, patent issues, and insurance discrimination. Occasionally the views of patients who have undergone genetic counselling and testing have been elicited, adding psychosocial and family issues. However, the general public has not had (...) the opportunity to contribute. In order to explore theatre as a health policy research tool, 1,200 audience members attended the play ‘Sarah’s Daughters’ in seven Canadian cities, following which audience discussions were audiotaped. This study performed a secondary qualitative analysis of the data to identify the ethical issues of adult predictive genetic testing important to members of the general public. The identified issues were: (1) need for public education; (2) choice to undergo genetic counselling and testing; (3) access to genetic counselling and testing; and (4) obligations regarding the handling of genetic information. Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions. (shrink)

This paper explores the power of theatre to engage the public and my personal journey using theatre as a research tool in reproductive science. I argue that the capacity of theatre to simultaneously engage the minds and hearts of audience members qua research participants affords audience members the capacity to provide researchers with insightful comments informed by the scientific, social and tacit knowledge derived from the performance, integrated with their lived experience. Theatre is a particularly important research strategy when investigating (...) public understandings and desires about complex issues such as those related to reproductive and genetic science. (shrink)