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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.

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.

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.

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.

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.

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.

Canadian clinicians must be aware of new standards of care resulting from national clinical practice guidelines, both to ensure best practice[1][1],[2][2] and to avoid malpractice litigation.[3][3],[4][4] Clinical practice guidelines can reduce successful malpractice actions through physician

Objective To develop guidance for clinicians participating in the informed choice process with respect to the donation of human embryos for research purposes. Recommendations 1.As indicated in the Canadian Institutes of Health Research Guidelines and the Assisted Human Reproduction Act, specific consent from both the gamete and embryo providers is required before embryos can be used for research purposes. The gamete donors may be different individuals than the embryo providers when donated gametes are used to create embryos. 2.The consent process should inform potential donors of the possible types of (and for final consent, the specific) research project(s) for which the embryos will be used; the risks involved in donating embryos to research, such as not having these embryos available for their reproductive purposes; the fact that the woman/couple will not benefit personally from donating embryos to research; the potential for commercial gain by others; the possibility that they will be contacted in future about the disposition of the embryos; the fact that confidentiality cannot be absolutely guaranteed. 3.Designation of cryopreserved embryos no longer be required for reproductive purposes to be donated to research, donated to another couple, or discarded should be discussed prior to gamete retrieval and made at the time of cryopreservation, with the understanding that in the future, final consent will be requested. The final decision as to the donation of cryopreserved embryos research should not be made until after the woman/ couple decide they no longer require the embryos for their reproductive purposes. The decision to end cryopreservation should be made separately from the decision regarding disposition of the embryos. The woman/couple will have to be re-contacted regarding the final disposition of their embryos. 4.As a result of lack of scientific data regarding the predictability of microscopic characterization of embryos and potential for pregnancy, it is recommended that all women/couples be offered the opportunity to cryopreserve all embryos not transferred during the treatment cycle and be informed that a failure to cryopreserve all embryos may increase the chance of having to undergo an additional in vitro fertilization cycle to achieve reproductive goals. 5.Research participants should be informed that they may withdraw their consent at any time before the embryos are thawed for research purposes, or, in the case of stem cell research, before a stem cell line is created. 6. Potential donors should be informed that their medical care will not be affected by their decision regarding embryo donation.

Objectives To develop and investigate a consent process that satisfies the Assisted Human Reproduction (AHR) Act and the Canadian Institutes of Health Research (CIHR) Stem Cell Guidelines, furthers free and informed choice, and fosters embryo donation to human embryonic stem cell (hESC) research. Methods Consultations were undertaken with an hESC scientist, in vitro fertilization (IVF) team members, and the ethicist-author of the CIHR Guidelines to review the AHR Act, the CIHR Stem Cell Guidelines, the established consent process for embryo donation at University Hospital, London Health Sciences Centre, the characteristics of patients appropriate for contact, and strategies for sensitive recruitment. Invitation-to-participate packages were sent to patients. Results Patients deemed appropriate for contact had indicated their intent to donate embryos to research, had embryos that had been cryopreserved for more than five years, had not received donor gametes, and had publicly listed addresses, with no suggestion of separation of the parties. Strategies developed to promote anonymity, confidentiality, and informed choice included a "firewall" between clinical and research teams and documents reiterating that, if embryos were donated, the woman would have to undergo additional IVF treatment to have a child. Of 40 couples contacted, only 22 agreed to donate embryos to the hESC study. One couple no longer wished to donate embryos to research, one package was returned as undeliverable, and no response was received from 16 couples. Conclusions The consent requirements of the AHR Act and the CIHR Stem Cell Guidelines should be met. Consider delaying the request for final consent until a significant time after IVF treatment to ensure that patients no longer want their embryos for reproductive purposes and are free from perceptions of coercion. A consent process promoting free and informed choice, sensitive recruitment, and donation of embryos for hESC research should be developed by the Canadian professional bodies.

The commentary by Abby Lippman and colleagues on the planned vaccination of Canadian girls aged 9–13 years with the HPV vaccine raises “questions and cautions”[1][1] for physicians, parents and citizens of Canada. As a physician who trained in the late 1970s with gynecologic-oncologist Hugh

Objective. This study explores the views of pregnant women and clinicians regarding discussion of exposure to phthalate plasticizers during pregnancy, subsequent to the 2011 Health Canada ban of certain phthalates at a concentration greater than 1000 mg/kg in baby toys. This occurred with no regulation of products to which pregnant women are exposed, such as food packaging and cosmetics. Methods. Pregnant women, physicians and midwives were recruited through posters and pamphlets in prenatal clinics in Southwestern Ontario for a semi-structured interview. All interviews were audiotaped, transcribed, and subjected to rigorous qualitative analysis through a grounded theory approach, supported by NVIVO™ software. Themes emerged from line by line, open, and axial coding in an iterative manner. Results: Theoretical sufficiency was reached after 23 pregnant women and 11 clinicians had been interviewed. The themes (and subthemes from which they arose) were: Theme I-Information Provision (IA-Sources of Information, IB-Standardization, IC-Constraints, ID-Role of Government); Theme II-Risk (IIA-Significant Risk, IIB-Perceived Relevance, IIC-Reconciliation); and Theme III- Factors Influencing Level of Concern (IIIA-Current Knowledge, IIIB-Demographic Factors). Conclusion: To respond to the increasing media and research attention regarding risk of phthalates to women, and pregnant women in particular, national professional organizations should provide patient information. This could include pamphlets on what a pregnant woman should know about phthalates and how they can be avoided, as well as information to clinicians to facilitate this discussion. © 2014 Sharma et al.; licensee BioMed Central Ltd.