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The need for comprehensive core curricula in medical education regarding the health of persons with disabilities has been identified by disability scholars for many years and was recently reinforced by our research indicating Canadian physicians lack knowledge of the social model of disability, and their legal duty to ensure accommodation for persons with disabilities to have equal access to health. The purpose of the current research is to investigate the existence of core medical education curricula devoted to the health of persons with disabilities and determine whether persons with disabilities were involved as curricular designers and educators. A comprehensive literature search of all academic sites found few papers reporting on such curricula, and the time devoted to these curricula was small. Only one medical school internationally was found to have persons with disabilities playing a major role as curricular designers. Further problematic was that “disability” tended to be portrayed by non-disabled professional actors hired as standardized patients (SPs), and only occasionally by actors with disabilities but in scripted SP roles distant from their lived experience. We contend that if persons with disabilities designed medical curricula, non-disabled SPs would be replaced by persons with disabilities as medical educators, sharing their own lived experiences. Another alternative in replacing professional able-bodied actor SPs is the novel education method of digital storytelling, with disabled persons sharing their lived experiences. Another immediate opportunity exists in Canada in the newly developing competency-based curricula for prominent core competencies to be designed and taught by persons with disabilities.

This narrative ethics exploration stems from my happy prostate-specific antigen (PSA) 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.

As I take a shortcut through a gentrified neighbourhood alleyway, which is strewn with needles and parked luxury vehicles, a hand reaches out to me, up to me. Requesting me. I reach for the hand and see a large man who must have stumbled beneath the axle of a parked BMW’s front wheels — unless

Although Juliet’s claim, ‘What’s in a name? That which we call a rose by any other name would smell as sweet’, may apply to family names, ‘that which we call’ embryos and procedures in reproductive genetics often smell sweet because the names were created to perfume not-so-sweet-smelling practices. Reproductive-genetic scientists and clinicians, including myself, have used perfumed names to make our research smell sweet for research ethics boards, research grant funders, government regulators, hospital administrators and the general public. The sweet-smelling names in reproductive genetics explored here include ‘pre-embryo’, preimplantation genetic ‘diagnosis’, ‘normal’ embryo, ‘suitable’ embryo, ‘healthy’ embryo, preimplantation genetic ‘testing’, ‘non-invasive prenatal testing’, ‘donation’, and most recently ‘mitochondrial replacement therapy’, a sweet-smelling name for germline nuclear transfer prohibited in antireproductive cloning legislation in most countries. In order for informed choices to occur for women who come to clinicians for information regarding reproductive genetics, and for transparency of scrutiny by research ethics boards, governmental regulators and the general public, it is essential that we consider the real meaning of sweet-smelling names in reproductive genetics.

In Canada, 15% of women report having a disability, most frequently mobility-related. Research with women with disabilities has for decades brought attention to barriers to reproductive health promotion. Research with physicians regarding why these barriers exist and how they can be dissolved has not occurred. Physicians were recruited through email and pamphlets to participate in 30-45 minute in-person interviews, audiotaped and transcribed verbatim. Charmaz-based qualitative analysis was supported by NVivo10TM software. Twenty-five interviews were conducted before theoretical sufficiency. Six themes were co-constructed: I-Physicians’ Perceptions of Barriers; II-Physicians' Perceptions of Consequences of Barriers; III-Resolving Barriers; IV-Physicians’ Sub-Understanding of Legal Right to Accommodation; V-Obligation of Physicians to Advocate for Accommodation; and VI-Language Suggesting Physicians’ Lack of Understanding of How Persons with Disabilities See Themselves and Want to be Seen. Physicians identified physical access barriers previously identified in critical disability studies literature, but did not identify the barriers of physician attitudes and lack of information provision as reported in this literature. Physicians perceived their additional time for pap smears and other surveillance strategies as barriers, particularly when not remunerated. Physicians were unaware of their legal obligation to accommodate under human rights codes, perceiving that taking extra time to provide accommodation was doing so out of the "goodness of your heart". Physicians used language illustrating many were unaware of how disabled persons see themselves and want to be seen. Education regarding disability rights and culture must be introduced immediately and prominently into all levels of medical education, with the educators being people with disabilities.

Dissolution of Canada's single-tiered health system is now before the Supreme Court of British Columbia and will soon be before the Supreme Court of Canada. If our Supreme Court justices are persuaded to dissolve the Canada Health Act, financially advantaged Canadians will be permitted to purchase privileged access to physicians, diagnostic tests, and surgical facilities. This queue jumping will diminish access for the socioeconomically disadvantaged, among whom women are overrepresented, including women living with disabilities, women of Indigenous heritage, and women who have recently immigrated to Canada. For example, women with disabilities receive fewer Pap tests and mammograms, as do women of First Nations communities, who are also reported to have a higher incidence of cervical cancer deaths. The option for physicians to "opt out" of public care is particularly problematic in Canada because we have one of the lowest physician-to-patient ratios of "developed" countries. Social justice in health promotion in Canada is threatened by those who would dissolve the Canada Health Act in neoliberal-thinking ink because social justice can flourish only when the prevailing imperatives in our health system are equality and not wallet size, access and not gatekeeping, fairness and not finance. Social justice in health promotion insists on improving the social determinants of health of all Canadians, not just financially better-off Canadians who already have access to better health outcomes through better nutrition, better environments, and better access to health professionals.

Objectives Women with disabilities are less likely to have cervical screening and mammography, and subsequently have a higher incidence of advanced cancers. This study explored the knowledge of physicians regarding their “duty to accommodate” women with disabilities to receive equal access to women's health promotion and care, and the possibility of including a core competency on duty to accommodate in the newly developing CBME. Methods Physicians were recruited to participate in 30–45 minute in-person interviews, audiotaped and transcribed verbatim. Charmaz-based qualitative analysis was supported by NVivo10TM software. Interviews were conducted until theoretical saturation reached. A legal analysis based on human rights codes was undertaken. Results The obstetricians and gynaecologists and family physicians interviewed commented on their lack of education in all levels of their medical training regarding promoting the health of women with disabilities. The physicians were unaware of their legal obligation to accommodate women with disabilities under provincial human rights codes and the United Nations Convention of the Rights of Person with Disabilities. Rather physicians perceived taking the extra time to provide accommodation was doing so out of the “goodness of your heart,” and commented that women with disabilities “...should feel fortunate that there are people out there willing to spend more time. … They should consider themselves lucky.” No competency in “duty to accommodate” women with disabilities was found. Conclusions Education in the rights of persons with disability and the duty of physicians to accommodate persons with disability must be prominently included in the newly - developing competency-based medical education curricula in Canada.

Background There have long been minimal risk thresholds beneath which risks may not need to be discussed in clinical research. This threshold concept may be applied to clinical practice. Our research explored application of minimal risk standards in research regulations to providing information in prenatal and pre-conception care. Methods A case study approach applied minimal risk standards in research regulations to prenatal and pre-conception care with respect to the risks of excess alcohol consumption, folic acid insufficiency, exposure to phthalate plasticizers, and exposure to brominated flame retardants (BFRs). Results Excess alcohol consumption and folic acid insufficiency were found to be above the minimal risk standards as outlined in research regulations, while exposure to phthalates and BFRs requires more evidence to determine whether they are above minimal risk. However, applying the minimal risk standard based on the daily life of a healthy adult or a fetus in a healthy pregnant woman, phthalates and BFRs are at the minimal risk threshold regardless of their potential harm since all pregnant women may be exposed to these chemicals in their daily life. Nevertheless, if there is demonstration of sufficient evidence of harm, they may be above minimal risk if such harm can be reduced by individual choice to avoid exposure. Conclusion The minimal risk concept in research regulations as applied to clinical practice may be useful to help clinicians and professional organizations determine what risks need be discussed in prenatal and pre-conception care.

In 2015 the United Kingdom became the first jurisdiction to approve "mitochondrial replacement techniques" (MRT), thereby dropping prohibitions against creating human embryos with a permanently altered genetic make-up for purposes of reproduction. MRT is a misnomer because in fact it is the nucleus of the oocyte of the woman who wants a genetically related child that is transferred to the enucleated oocyte of a woman paid to undergo IVF to provide the oocyte. MRT thus constitutes nuclear transfer, which is prohibited by criminal sanctions under sections of laws on reproductive cloning in Canada, the United States, Australia, and European countries that regulate assisted reproduction. By adopting policies permitting the use of MRT, the United Kingdom has become the first jurisdiction to counteract an international consensus prohibiting germline modification. Analyses of the legal, ethical, and societal implications of MRT in assisted human reproduction are essential.

Purpose As resident work hours policies evolve, residents' off-duty time remains poorly understood. Despite assumptions about how residents should be using their postcall, off-duty time, there is little research on how residents actually use this time and the reasoning underpinning their activities. This study sought to understand residents' nonclinical postcall activities when they leave the hospital, their decision-making processes, and their perspectives on the relationship between these activities and their well-being or recovery. Method The study took place at a Liaison Committee on Medical Education-accredited Canadian medical school from 2012 to 2014. The authors recruited a purposive and convenience sample of postgraduate year 1-5 residents from six surgical and nonsurgical specialties at three hospitals affiliated with the medical school. Using a constructivist grounded theory approach, semistructured interviews were conducted, audio-taped, transcribed, anonymized, and combined with field notes. The authors analyzed interview transcripts using constant comparative analysis and performed post hoc member checking. Results Twenty-four residents participated. Residents characterized their predominant approach to postcall decision making as one of making trade-offs between multiple, competing, seemingly incompatible, but equally valuable, activities. Participants exhibited two different trade-off orientations: being oriented toward maintaining a normal life or toward mitigating fatigue. Conclusions The authors' findings on residents' trade-off orientations suggest a dual recovery model with postcall trade-offs motivated by the recovery of sleep or of self. This model challenges the dominant viewpoint in the current duty hours literature and suggests that the duty hours discussion must be broadened to include other recovery processes.

Limited clinical research with pregnant women has resulted in insufficient data to promote evidence-informed prenatal care. Charmaz’s constructivist grounded theory methodology was used to explore how research with pregnant women would be determined ethically acceptable from the perspectives of pregnant women, health care providers, and researchers in reproductive sciences. Semistructured interviews were conducted with a purposive sample of 12 pregnant women, 10 health care providers, and nine reproductive science researchers. All three groups suggested the importance of informed consent and that permissible risk would be very limited and complex, being dependent on the personal benefits and risks of each particular study. Pregnant women, clinicians, and researchers shared concerns about the well-being of the woman and her fetus, and expressed a dilemma between promoting research for evidence-informed prenatal care while securing the safety in the course of research participation.

ObjectiveFamily physicians in Canada as reported in several studies do not recognize the importance of family history in relation to breast/ovarian cancer and thus Canadian women with strong family histories continue to develop early-onset breast cancer without the knowledge of or ability to make choices regarding increased surveillance or preventative strategies. This study explored the feelings of women who learned about their hereditary risk only after their diagnosis younger than 52 years and who eventually tested positive for a BRCA gene mutation.MethodsThirty-four such women were mailed an invitation to participate in this research including a letter of information, consent form, and discussion prompts for their written narrative response. Rigorous mixed method analyses were performed using Charmaz-based qualitative analyses as well as quantitative analyses.ResultsThirteen women (38.2%) responded with narratives for qualitative analysis from which 4 themes were coconstructed as follows: I, types of emotions; II, emotional response; III, coping with emotions; and IV, advice to women at similar risk. Women felt they should have learned about their hereditary risk from their family physician and through public education before their diagnosis. Although not experienced at the time of diagnosis, anger, frustration, and regret were experienced after receiving their BRCA results. These emotions arose from our research participants’ lack of opportunity for prior genetic counseling and testing opportunity for genetic counseling and testing.ConclusionsWith increased public and physician education, it is hoped that women with significant family histories of breast/ovarian cancer will be identified before diagnosis and given options regarding cancer surveillance and risk reduction strategies.

Background: Noninvasive prenatal testing (NIPT) strategies that analyze cell-free fetal DNA found in maternal blood have proliferated in the past several years. Many different parties have been involved in the development, evaluation, and diffusion of NIPT, resulting in rhizomatic growth of this technology. Here, we use a technology studies lens to examine the way NIPT has been constructed in informational documents and offer suggestions for ethics analysis. Methods: An inductive qualitative content analysis was conducted on 20 documents produced by organizations that claim authority to construct a version of NIPT (13 vendor documents, 7 health professional society documents). Results: Analysis revealed that each document describes a different version of the test, offering different claims of purpose, target population, health care professional involvement, relationship to other technologies, fallibility, and risk. Conclusions: The different versions of NIPT technologies entail different sets of ethical q...

Although I applaud Dr. Andrew Hogan’s article in CMAJ [1][1] for bringing the social model of disability to the attention of its extensive readership, as well as the need for more persons with disabilities to be able to attend medical school, the article is dismissive of the imperative that the

J Obstet Gynaecol Can 2015;37(9):829–831 O February 3, 2015, the Parliament of the United Kingdom approved the use of “mitochondrial replacement” for women wishing to have a genetically related child who might then be at risk for a mitochondrial disorder.1 The United States Food and Drug Administration’s Cellular, Tissue, and Gene Therapies Advisory Committee is considering a proposal to allow “mitochondrial replacement” in 2015.2 What is actually happening in “mitochondrial replacement” is not mitochondrial replacement; instead, it is the transfer of the nucleus from the oocyte of an IVF patient seeking to be a genetic parent to the enucleated oocyte of a woman who is being paid to undergo IVF to provide an ooplasmic vessel containing supposedly healthy mitochondria. The new reproductive genetics term “mitochondrial replacement” being substituted for germ-line nuclear transfer is reminiscent of other euphemisms used in reproductive genetics to open prickly barn doors to human research, as well as to gain clinical and public acceptance.

Background: Recent media reports on human studies associating brominated flame retardants (BFRs) in household products in pregnancy with urogenital anomalies in boys and endocrine disruption in both sexes. We sought to explore the perceptions of pregnant women of brominated flame retardant (BFR) exposure, in light of recent media reports on the adverse health effects of BFR exposure prenatally. Methods: Pregnant women were recruited for interviews through posters and pamphlets in prenatal clinics, prenatal fairs and community centres. Interviews were audiotaped and transcribed verbatim for Charmaz-based qualitative analysis supported by NVIVO 10™. Results: Theoretical sufficiency was reached after analyzing the interviews of 23 pregnant women. Themes co-constructed were: I-Lack of Awareness of BFRs; II-Factors Influencing BFR Exposure; III-Responsibility; IV-Informed Choice. Almost all participants felt it was difficult to make informed choices to avoid BFRs, and wanted communication from clinicians and regulation from governments regarding decreasing BFR exposure. Conclusion: Pregnant women in Canada may be unaware of the potential risks of exposure to BFRs. Professional organizations and governments should further study risk associated with BFR exposure in pregnancy and provide educational materials for pregnant women and clinicians regarding BFR exposure.

The 2011 SOGC clinical practice guideline “Prenatal Screening for Fetal Aneuploidy in Singleton Pregnancies” recommends that clinicians offer prenatal screening to all pregnant women and provide counselling in a non-directive manner . Non-directive counselling is intended to facilitate autonomous decision-making and remove the clinician’s views regarding a particular course of action . However, recent research in genetic counselling raises concerns that nondirective counselling is neither possible nor desirable, and that it may not be the best way to facilitate informed choice . We propose an alternative model of information-sharing specific to prenatal screening that combines attributes of the models of informative decision-making and shared decision-making . Our proposed model is intended to provide clinicians with a strategy to communicate information about prenatal screening in a way that facilitates a shared deliberative process and autonomous decision-making . Our proposed model may better prepare a pregnant woman to make an informed choice about participating in prenatal screening on the basis of her consideration of the medical information provided by her clinician and her particular circumstances and values .

The fulfilment of promises made 25 years ago to link clinical conditions with gene sequences has allowed patients and families to better understand hereditary conditions[1][1]–[4][2] and make choices regarding prevention, early detection and treatment.[2][3]–[4][2] There have also been warnings

There is national recognition of the need to incorporate Aboriginal health issues within the medical school curricula. This study aims to evaluate changes in medical students’ knowledge and attitudes about Aboriginal health, and their preparedness to work in Aboriginal communities after attending a 3-hour Aboriginal health seminar. A cross-sectional survey was administered before and after the seminar for Year 1 and 2 medical students at the University of Western Ontario. The survey included four true or false questions and 24 questions using a seven-point Likert scale (1 – strongly disagree, 7 – strongly agree). Eighty two of 130 (64 per cent) Year 1 students and 55 of 86 (63 per cent) Year 2 students completed both questionnaires. Knowledge-based questions were answered correctly by most students before the seminar, with an increasing number of correct responses noted after the seminar ( p < 0.05). Students’ perceptions about sociocultural and economic factors affecting health showed uncertainty before the seminar, but changed towards greater agreement regarding its impact on health after the seminar ( p < 0.05). Students initially felt unprepared to care for Aboriginal patients before the seminar, but felt more prepared after the seminar ( p < 0.05). A 3-hour seminar using both didactic and non-traditional teaching methods appears to be effective in the short term in improving knowledge, changing attitudes and reversing some of the uncertainties medical students have about practicing in Aboriginal communities.

I have been writing plays for 15 years so that reflection of the heart as well as the mind can be part of equitable and fair health and social policy development. In this paper, I critically reflect on my new play Calcedonies, including the writing of the script and why I had to write it. I include the first section of Calcedonies for the reader to have a sense of the play’s construction, characters, and the issues that will be personalized and unpacked over the course of the play. In the decade it took me to have the courage to begin writing this play, I realize that my reflection was as much about how I let the woman down who asked me to write a play about her, as it was about how our health and social support systems let her down.

Objective To determine the current practice patterns of preimplantation genetic diagnosis (PGD) in Canada related to genetic counselling, embryo biopsy, and cytogenetic and molecular analyses. Methods An Internet survey was constructed and administered following Dillman's tailored design method. The contact information for medical directors of all 28 Canadian IVF units was provided by Assisted Human Reproduction Canada. Results Seventeen of the 28 Canadian IVF units responded, 16 of which offered PGD. Of these, 35% performed embryo biopsy on site, 41% transferred embryos for biopsy to another Canadian unit, and 18% transferred embryos to the United States. Both cytogenetic and molecular analysis were performed on site in 24% of responding units, with 24% and 18% respectively performed in another Canadian unit, and 24% and 35% performed in the United States. Of the clinics that do not perform PGD, seven (41%) indicated that they would like to offer PGD but do not have the resources or expertise to make it available. Almost all units indicated that genetic counselling was provided by genetic counsellors or medical geneticists, usually off site. Conclusion Because the majority of Canadian units offering PGD send embryos or biopsies to another unit in Canada or the United States, regionalization of PGD services should now be considered. Because 41% of IVF units not offering PGD indicated that they would if they had the resources, and because IVF may soon become publicly funded in several provinces, dramatically increasing the number of people who might seek PGD, many more PGD centres will be necessary.

The increase in bioethics education in preclinical curricula enables medical students to recognize ethical issues and determine right action. The authors sought to explore the ethical dilemmas medical students experience during clinical clerkships.Following an e-mail invitation, 100 of 104 graduating medical students allowed their final ethics assignment, a written description of an ethical dilemma experienced during clinical clerkship, to be analyzed. After all identifiers were removed, the narratives underwent qualitative analysis and were then reanalyzed using Jameton's determinants of moral action.Four themes emerged: the clinical service rotation, target, source, and nature of the ethical dilemma. For many clinical clerks, the ethical dilemma arose because they recognized an ethical issue but neither brought it to their supervisors nor resolved it themselves for fear of incurring disfavor. The source of the ethical dilemma was most frequently the student's supervisor (46%), which may explain why, although all narratives demonstrated the Jameton criteria of "moral sensitivity" and 76% demonstrated "moral judgment," only 24% indicated "moral motivation" and only 4% suggested "moral courage." Patients were the most frequent target (76%), followed by students (14%). Students reported informed consent (18%) and inadequate care (17%) as the most common types of dilemmas under the nature theme.Clinical clerks' experiences of ethical dilemmas might be mitigated if residency education and professional development mirrored the increase in preclinical ethics education, if ethics training included encouraging students to discuss ethical issues as they arise, and if educators developed innovative models of student evaluation.

Arts-based approaches to public engagement offer unique advantages over traditional methods of consultation. Here we describe and assess our use of theatre as a method of public engagement in the development of health policy on preimplantation genetic diagnosis, a controversial method for selecting the genetic characteristics of embryos created through in vitro fertilization. Funding from the Canadian Institutes for Health Research and Health Canada supported 16 performances of the play Orchids in Vancouver, Toronto, and Montréal and post-performance discussion in English and French (with Hubert Doucet) in 2005. A total of 741 individuals attended. The methods used to assess audience engagement and elicit policy-relevant dialogue included in-theatre observation of audience responses, moderated post-performance large audience discussion and focus groups, audience feedback forms and researcher fieldnotes. Emphasizing process and context over emerging outcomes, we reflect on the distinctive contributions of theatre in stimulating public engagement and the need to utilize multiple methods to adequately assess these contributions. We suggest continued dialogue about the possible uses of theatre in health policy development and conclude that greater clarity is needed with regard to citizens' (as well as specific stakeholders, policy makers' and sponsors') desired outcomes if there is to be a suitably nuanced and reflexive basis for assessing the effectiveness of various strategies for public engagement.

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.

Resume Objectif Offrir des conseils aux cliniciens qui participent au processus de choix eclaire en ce qui a trait au don d'embryons humains a des fins de recherche. Recommandations 1.Comme le stipulent les lignes directrices des Instituts de recherche en sante du Canada et la Loi sur la procreation assistee, le consentement explicite tant des donneurs de gametes que des donneurs d'embryons est requis avant que des embryons ne puissent etre utilises a des fins de recherche. Les donneurs de gametes et les fournisseurs d'embryons peuvent ne pas etre les memes personnes lorsque la creation d'embryons fait appel a des dons de gametes. 2.Le processus de consentement doit indiquer ce qui suit aux donneurs potentiels: les types possibles (et, dans le cas du consentement final, le type particulier) de projet de recherche dans le cadre desquels les embryons seront utilises; les risques associes au don d'embryons a la recherche, tel que le risque de ne plus avoir par la suite acces a ces embryons a des fins genesiques; le fait que la femme / le couple ne tireront pas personnellement profit du don d'embryons a la recherche; les gains commerciaux que pourront potentiellement en tirer des tierces parties; la possibilite que l'on communique avec eux a l'avenir au sujet de la disposition des embryons; le fait que la confidentialite ne peut faire l'objet d'une protection absolue. 3.La designation selon laquelle les embryons cryoconserves n'etant plus requis a des fins genesiques doivent etre donnes a la recherche, donnes a un autre couple ou elimines doit faire l'objet d'une discussion avant la recuperation des gametes et etre etablie au moment de la cryoconservation, les personnes concernees comprenant bien que, a l'avenir, un consentement final sera requis. La decision finale quant au don d'embryons cryoconserves ne devrait pas etre prise avant que la femme / le couple n'aient decide qu'ils n'ont plus besoin des embryons en question a des fins genesiques. La decision de mettre fin a la cryoconservation des embryons et la decision quant a leur disposition doivent etre prises separement. La femme / le couple devront etre consultes a nouveau en ce qui a trait a la disposition finale de leurs embryons. 4.Compte tenu du manque de donnees scientifiques quant a la previsibilite de la caracterisation microscopique des embryons et de leur potentiel d'engendrer une grossesse, il est recommande d'offrir a toutes les femmes / tous les couples l'occasion de cryoconserver tous les embryons n'ayant pas ete transferes au cours du cycle de traitement et de les aviser que le fait de ne pas proceder a la cryoconservation de ces embryons peut accroitre leur risque de devoir subir un cycle supplementaire de FIV afin d'atteindre leurs objectifs genesiques. 5.Les participants a la recherche doivent etre avises du fait qu'ils peuvent retirer leur consentement en tout temps avant la decongelation des embryons a des fins de recherche ou, dans le cas de la recherche sur les cellules souches, la creation d'une lignee de cellules souches. 6.Les donneurs potentiels doivent etre avises que leurs soins medicaux ne seront aucunement affectes par leur decision quant au don d'embryons.

An exploration of distributive justice in Canadian infertility treatment requires the integration of ethical, clinical, and economic principles. In 1971, American philosopher John Rawls proposed a theoretical model for fair decision-making in which "rational" and "self-interested" citizens are behind a "veil of ignorance" with respect to both their own position and the position of other decision-makers. Rawls proposed that these self-interested decision-makers, fearing that they are among the least advantaged persons who could be affected by the decision, will agree only upon rules that encode equality of opportunity and that bestow the greatest benefit on the least advantaged citizens. Regarding health policy decision-making, Rawls' model is best illustrated by Canadian philosopher Warren Bourgeois in his panel of "volunteers." These rational and self-interested volunteers receive an amnestic drug that renders them unaware of their health, social, and financial position, but they know that they are representative of diverse spheres of citizens whose well-being will be affected by their decision. After describing fair decision-making, Bourgeois considers the lack of a distributive justice imperative in Canada's Assisted Human Reproduction Act, in contrast to legislation in European nations and Australia, summarizes the economic and clinical considerations that must be provided to the decision-makers behind the "veil of ignorance" for fair decisions to occur, and considers altruism in relation to equality of access. He concludes by noting that among countries with legislation governing assisted reproduction Canada is alone in having legislation that is void of distributive justice in providing access to clinically appropriate infertility care.

Through Preimplantation Genetic Diagnosis, embryos created by IVF are selected for transfer to a woman based on particular characterisations, including the presence of genetic markers or a tissue match for a sibling. In this paper we examine the precise language used in the recent policy and regulatory documents of four jurisdictions (the United Kingdom, Australia, Canada and New Zealand) that in any way characterises the post-PGD embryo. We then explore the mutually constructed relationship between how that embryo is characterised and the purposes for which PGD is applied, as well as the types of uses to which the post-PGD embryo is ultimately relegated. As our analysis indicates, based on the information provided through PGD, a number of possible categorisations of the post-PGD embryo emerge depending both on the outcome of PGD, and the initial intention behind the procedure.

U p b nformation about umbilical cord blood (UCB) banking is surfacing at a very rapid pace. The messages, argely targeted toward women, encourage motherso-be to bank their child’s UCB. Indeed, an everrowing number of Internet sites and magazine adertisements are cautioning women that storing a ewborn’s UCB is a once-in-a-lifetime opportunity nd a worthwhile investment that can save their child f it were to ever become necessary. Previously conidered as waste and discarded without second hought, the umbilical cord is now actively being ought for hematopoietic stem cell transplantation. tem cells harvested from UCB have successfully been sed to substitute for bone marrow as a source of ematopoietic stem cells for transplants in the treatent of genetic disease, blood malignancies, and mmune deficiencies. The promise of private banking, oupled with pleas from public banks asking mothers o donate UCB for altruistic purposes, can become uzzling for pregnant women. To allow them to make n informed choice about UCB banking, it is imporant that women receive complete and accurate inforation from their obstetrical care providers. The purose of this editorial is to raise awareness about UCB anking. Most important, it focuses on the importance f knowledge in the decision-making process. Women ho know more about UCB banking are more likely o make appropriate choices for both themselves and heir families.

Background: Current developments in science and the media have now placed pregnant women in a precarious situation as they are charged with the responsibility to navigate through information sources to make the best decisions for her pregnancy. Yet little is known regarding how pregnant women want to receive and use health information in general, let alone information regarding the uncertain risks to pregnancy in everyday household products such as phthalates found in cosmetics and canned food liners. Using phthalates as an example, this study investigated how pregnant women obtain, evaluate, and act on information regarding their pregnancy. Methods: Pregnant women were recruited using pamphlets and posters distributed in prenatal clinics, prenatal fairs and physician offices in Southwestern Ontario Canada. Research participants were engaged in 20 to 40 min semi-structured interviews regarding their use of information sources in pregnancy, particularly regarding phthalates in cosmetics and canned food liners. Interviews were transcribed verbatim and analyzed using constructivist grounded theory techniques supported by NVivo 9™ software. Results: Theoretical sufficiency was reached after 23 pregnant women were interviewed and their transcripts analyzed. Three overlapping themes resulted from the co-constructed analysis: I-Strength of Information Sources; II-Value Modifiers; and III-Deciding to Control Exposure. The research participants reported receiving information from a wide range of sources that they perceived varying in strength or believability. They then described the strategies employed to increase the validity of the message in order to avoid risk exposure. Pregnant women preferred a strong source of information such as physician, government but frequently used weak sources such as the internet or the opinions of friends. A model was developed from the relationship between themes that describes how pregnant women navigate the multiple sources of information available to them. Conclusion: Our study provides insight into how pregnant women receive, appraise, and act on information regarding everyday household chemicals. Clinicians and their professional organizations should produce specific educational materials to assist women in understanding exposure to everyday products in pregnancy.

Family physicians in Canada as reported in several studies do not recognize the importance of family history in relation to breast/ovarian cancer and thus Canadian women with strong family histories continue to develop early-onset breast cancer without the knowledge of or ability to make choices regarding increased surveillance or preventative strategies. This study explored the feelings of women who learned about their hereditary risk only after their diagnosis younger than 52 years and who eventually tested positive for a BRCA gene mutation.Thirty-four such women were mailed an invitation to participate in this research including a letter of information, consent form, and discussion prompts for their written narrative response. Rigorous mixed method analyses were performed using Charmaz-based qualitative analyses as well as quantitative analyses.Thirteen women (38.2%) responded with narratives for qualitative analysis from which 4 themes were coconstructed as follows: I, types of emotions; II, emotional response; III, coping with emotions; and IV, advice to women at similar risk. Women felt they should have learned about their hereditary risk from their family physician and through public education before their diagnosis. Although not experienced at the time of diagnosis, anger, frustration, and regret were experienced after receiving their BRCA results. These emotions arose from our research participants' lack of opportunity for prior genetic counseling and testing opportunity for genetic counseling and testing.With increased public and physician education, it is hoped that women with significant family histories of breast/ovarian cancer will be identified before diagnosis and given options regarding cancer surveillance and risk reduction strategies.

Purpose To explore theatre as a public engagement tool for health-policy development. Background In a justice-based democracy, engagement of a large number of citizens of diverse perspectives is required for legitimate health-policy development. However, all current strategies of citizen participation are limited in their capacity to engage, either by lack of opportunity to educate citizens prior to soliciting their opinions or lack of large numbers of citizens. Methods A series of 12 nested case studies was conducted, with each case study consisting of a performance of a 70-min play, specifically written to educate citizens to scientific, clinical, and psychosocial issues of adult predictive genetic testing, and to foster empathy for persons immersed therein; and a 1-h audience discussion that was taped and transcribed for qualitative analysis (modified thematic). The script was based on key informant interviews, literature review, and six script readings for key informants and communities. Audience members were recruited through conference or educational event programs, posters, newsletters, and electronic announcements, as well as newspaper advertisements and other public, community and institutional postings. Results More than 1000 citizens were engaged. The analysis indicated that audience members were engaged emotionally and cognitively in the position of the characters and the health-policy issues. Audience members’ comments forwarded from personal or professional lived experience confirmed the validity of the script and promoted further emotional and cognitive engagement of other audience members. Audience members offered informed and diverse opinions on policy issues, including resource allocation, patenting of genetic tests, research funding, genetic test-based insurance discrimination, and imperative for public education. The potential for harm to key informants and audience members (and those in relationships with them) were observed, usually related to learning or offering personal information regarding their genetic risk. Conclusion As many citizens can be engaged in theatre-based policy development as surveyed through public opinion polls, and many times the number that can be engaged in strategies that educate citizens prior to soliciting their opinions, likely at a similar cost per citizen engaged.

The increasing number of sequenced genes that can be used to develop tests for inherited conditions has stimulated an increasing number of genetics-based narratives by journalists, novelists, playwrights, filmmakers, and health-care educators. Genetics-based narratives are to be welcomed if the public is to understand genetic science and its implications on persons, families, and communities. However, a number of important ethical issues insist caution in their research and presentation. Just as the requirements for informed consent to undergo genetic testing exceed the requirements for informed consent to undergo other types of medical testing because of the inherent complex relationships (such as between parent and child, gene carrier and other family members, gene carrier and ethnic community) and because of concerns regarding privacy and insurance discrimination, the requirements for informed consent to present a genetics-based narrative must exceed the requirements for informed consent to present other medical narratives. We recommend that a transmedia, multidisciplinary, international conference should be convened to develop guidelines for the moral presentation of genetics-based narratives, whose deliberations should be informed by the protections provided for narrative research participants, the requirements of consent for genetic testing (which include a counseling process involving all appropriate family members), and a professional obligation to do no harm to the persons and families whose genetics-based stories we present.

I continue to “worry” 1 about how difference becomes pathologized when physicians, medical procedures, and researchers (laboratory and philosophy/social) focus on preventing children of particular ...

M Angelina Jolie, dont la mere est morte du cancer de l’ovaire a l’âge de 56 ans, a fourni aux Canadiennes exposees a un risque hereditaire d’en venir a presenter un cancer du sein / de l’ovaire les renseignements que Sante Canada et les organisations de sante non gouvernementales ne sont pas parvenus a leur offrir depuis 20 ans. Nous en sommes encore a des annees de disposer des donnees empiriques qui pourraient etayer l’effet de la sortie publique d’Angelina Jolie sur une possible baisse du nombre des deces attribuables aux cancers du sein et de l’ovaire hereditaires d’apparition precoce au Canada; pour y parvenir, nous devrons chercher a savoir comment les femmes en sont venues a prendre connaissance de la relation entre leurs antecedents familiaux et le risque auquel elles sont exposees. Toutefois, l’effet de cette sortie s’est deja fait sentir : le nombre d’orientations par semaine vers notre unite de counseling genetique en matiere de cancer a triple et nous avons constate une hausse spectaculaire des demandes telephoniques de consultation, dont bon nombre proviennent de medecins de famille n’ayant jamais eu recours a nos services auparavant (Karen Panabaker, communication personnelle, le 14 juin 2013). Sans cette sortie d’Angelina Jolie, combien de ces femmes dorenavant orientees vers nos services en seraient venues a presenter un cancer du sein de stade avance sans savoir que leurs antecedents familiaux les avaient exposees a un risque eleve et qu’ils auraient justifie la mise en œuvre d’une surveillance par IRM (laquelle aurait pu detecter le cancer du sein au stade I et ameliorer leur taux de survie de 70 %1) et de strategies de counseling genetique, de depistage et de prevention? Pourquoi l’initiative pedagogique de sante publique menee par Angelina Jolie est-elle la premiere initiative de sante publique a grande echelle a survenir au Canada?

The concept of a minimal risk threshold in research, beneath which exception to informed consent and ethics review processes may occur, has been codified for over 30 years in many national research regulations and by the Council for International Organizations of Medical Sciences. Although minimal risk in research constitutes one of the criteria for allowing waiver of informed consent or modification to the consent process and a large body of literature exists, discussion of a minimal risk threshold in clinical practice has not occurred. One reason for lack of discussion may be that implicit consent is accepted for a wide range of routine clinical practices. Extending the role of minimal risk in research to clinical practice might assist clinicians in identifying circumstances for which implicit consent is indeed sufficient and circumstances in which it is not. Further, concepts from minimal risk in research might assist clinicians regarding when information provision in health promotion is required. We begin by reviewing concepts in both minimal risk in research and informed choice in clinical practice. We then explore how a clinical minimal risk concept may clarify recommendations for information provision in clinical practice and support the patient's informed choice regarding therapeutic and diagnostic procedures and also health promotion. Given that clinical practice involves a broad scope of health information, professional practice guidelines on information provision based on the application of the minimal risk threshold in research could be developed to guide clinicians in what information must be provided to their patients.

Anonymity, according to Tilley and Woodthorpe, refers to removing or obscuring participant information, whereas “confidentiality refers to the management of private information.” Both are major considerations for ethics review boards, but can be challenges when “studying up” in qualitative research because of the depth, precision, and uniqueness of the information, and the prominence of research participants. In anthropology, providing detailed and nuanced accounts of particular spaces, events, and conditions is essential. Actions taken to hide or gloss over these particulars would impede the ability to demonstrate authenticity, validity, and verisimilitude. As social science moves into field sites such as cutting-edge genomics, where when studying up, participants through their particular contributions might be identified, strategies to decrease the friction between descriptive methodologies and the requirement for anonymity need to be developed. We conclude with recommendations for researchers and members of research ethics boards regarding how to anticipate and mitigate this tension.

New technologies analyzing fetal DNA in maternal blood have led to the wide commercial availability of non-invasive prenatal testing (NIPT). We present here for clinicians the ethical and policy issues related to an emerging practice option. Although NIPT presents opportunities for pregnant women, particularly women who are at increased risk of having a baby with an abnormality or who are otherwise likely to access invasive prenatal testing, NIPT brings significant ethics and policy challenges. The ethical issues include multiple aspects of informed decision-making, such as access to counselling about the possible results of the test in advance of making a decision about participation in NIPT. Policy considerations include issues related to offering and promoting a privately available medical strategy in publicly funded institutions. Ethics and policy considerations merge in NIPT with regard to sex selection and support for persons living with disabilities.Les nouvelles techniques qui font appel à l’analyse de l’ADN fœtal dans le sang maternel ont mené à l’élargissement de la disponibilité commerciale du dépistage prénatal non effractif (DPNE). Nous présentons ici, à l’intention des cliniciens, les questions d’éthique et de politique qui sont associées à une option de pratique émergente. Bien que le DPNE offre des possibilités aux femmes enceintes (et particulièrement aux femmes qui sont exposées à des risques accrus de donner naissance à un enfant présentant une anomalie ou qui sont autrement susceptibles d’avoir recours au dépistage prénatal effractif), il donne lieu à des défis considérables en matière d’éthique et de politique. Les multiples aspects de la prise d’une décision éclairée (comme l’accès à des services de counseling au sujet des résultats possibles du test avant la prise d’une décision quant à la participation au DPNE) font partie des enjeux éthiques. Parmi les considérations en matière de politique, on trouve les questions liées à l’offre et à la promotion, au sein d’établissements subventionnés par l’État, d’une stratégie médicale offerte au privé. Les considérations en matière d’éthique et de politique s’entremêlent dans le cas du DPNE, pour ce qui est des questions relevant de la sélection du sexe et de l’offre d’un soutien aux personnes qui vivent avec des incapacités.