Roxanne Mykitiuk

The Public Nature of Private Violence

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Wrongful birth litigation and prenatal screening

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

Informed Consent to Donate Embryos for Research Purposes

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.

The Canadian Assisted Human Reproduction Act: Protecting Women’s Health While Potentially Allowing Human Somatic Cell Nuclear Transfer into Non-Human Oocytes

Caulfield and Bubela (2007) argue that the Canadian Assisted Human Reproduction Act (An Act Respecting Assisted Human Reproduction and Related Research (S.C. 2004, c.2) imposes a complete “criminal ban” on somatic cell nuclear transfer (SCNT) that is unwarranted because, they contend, the ban was based on concerns regarding the moral status of the human embryo, which is inappropriate in a “pluralistic society.”

The Rights of the Adolescent: The Mature Minor

Health care providers who treat adolescents may also be required to diagnose and treat the reproductive health conditions of minor patients and to facilitate health prevention measures, including contraception and testing for sexually transmitted diseases. Teens who do not want their parents to know about their sexual behaviour may consult a health care provider for reproductive or sexual health care services and treatment without parental knowledge or consent. This may present legal and ethical dilemmas for health care providers. Common law recognizes that adolescents under the legal age of majority who are sufficiently mature (the mature minor) may have the capacity to consent to health care services with the same independence as adults. Such capacity to consent needs to be determined on an individual basis. Where there is disagreement between a mature minor and her parent(s) about a medical procedure or treatment, the wishes of the adolescent should prevail. Under law, a married minor is usually treated as having attained majority status; however, fertility services cannot ethically be denied if the unmarried adolescent is found capable and they are required medical services for that individual. Parents or legal guardians generally have the legal authority and responsibility to act as surrogate decision makers for adolescents found incapable of making their own health care decisions. Although confidentiality is essential, there are some exceptions to absolute confidentiality.

Constructing ‘Health’, Defining ‘Choice’: Legal and Policy Perspectives on the Post-PGD Embryo in Four Jurisdictions

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.

Gender Equity in Clinical Trials in Canada: Aspiration or Achievement?

Achieving gender equity in clinical trials requires that women be included in sufficient numbers to carry out analysis, that sub-sample analyses be performed, and that results be communicated in such a way as to expand medical knowledge, inform policy decisions, and educate patients. In this article, we examine the extent to which Canada promotes gender equity through its laws and guidelines, viewed within the context of its drug safety system and its research ethics board structure. We analyze the structuring of information by the pharmaceutical industry and consider the impact of its promotional activities on the state of gender knowledge and health. In the final section, we propose ways to improve the structuring of health information to promote gender equity.

Cultivating disability arts in Ontario

This work was supported by the Canadian Institutes for Health Research Grant #106597; the Canadian Foundation for Innovation Project #35254; and the Canada Research Chairs Award #950-231091.

Cripping the Ethics of Disability Arts Research

The use of multimedia story-making and narrative-based drama in disability research raises conventional ethical issues of informed consent, anonymity, and confidentiality. In this chapter, we explore unique issues that arise when working with non-normatively embodied/enminded participants in a collaborative way, using arts-based mediums that transgress boundaries of anonymity and privacy, and call for difference-tailored consent processes. We identify unique ethical issues/practices arising out of our research with Re•Vision, a research-creation centre that uses the power of the arts to dismantle stereotypical understandings of mind-body difference that create barriers to healthcare. Drawing on Re•Vision’s arts research, we map ethical conditions under which participants/collaborators/artists create their stories, and how curation of multimedia stories and drama gives rise to an ethics of voice and bearing witness.

The potential for misusing "genetic predisposition" in Canadian courts and tribunals

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