ABSTRACT BACKGROUND Understanding the complex interaction of risk factors that increase the likelihood of developing common diseases is challenging. The Canadian Partnership for Tomorrow Project ...(CPTP) is a prospective cohort study created as a population-health research platform for assessing the effect of genetics, behaviour, family health history and environment (among other factors) on chronic diseases. METHODS Volunteer participants were recruited from the general Canadian population for a confederation of 5 regional cohorts. Participants were enrolled in the study and core information obtained using 2 approaches: attendance at a study assessment centre for all study measures (questionnaire, venous blood sample and physical measurements) or completion of the core questionnaire (online or paper), with later collection of other study measures where possible. Physical measurements included height, weight, percentage body fat and blood pressure. Participants consented to passive follow-up through linkage with administrative health databases and active follow-up through recontact. All participant data across the 5 regional cohorts were harmonized. RESULTS A total of 307 017 participants aged 30–74 from 8 provinces were recruited. More than half provided a venous blood sample and/or other biological sample, and 33% completed physical measurements. A total of 709 harmonized variables were created; almost 25% are available for all participants and 60% for at least 220 000 participants. INTERPRETATION Primary recruitment for the CPTP is complete, and data and biosamples are available to Canadian and international researchers through a data-access process. The CPTP will support research into how modifiable risk factors, genetics and the environment interact to affect the development of cancer and other chronic diseases, ultimately contributing evidence to reduce the global burden of chronic disease.
The response to the announcement in China on Nov 25, 2018, of the first clustered regularly interspaced short palindromic repeats CRISPR babies is reminiscent of that surrounding the 1978 birth by in ...vitro fertilization of Louise Brown, the first test-tube baby. Will this new form of gene editing, of genetic enhancement, of germline modification, or even better, of gene surgery eventually become equally commonplace? CRISPR gene-editing techniques are not new. But ethicists and scientists around the world seem to have uniformly condemned the experiment. The genetic alteration of the 2 embryos that were implanted and carried successfully to term was reported to make the children resistant to possible future HIV infection. The health of the babies, the success of the editing or, indeed, the gene surgery itself were not scientifically validated or peer reviewed. Human rights are universal and create positive obligations. Canada's criminal prohibition of basic research using human germline modification is unnecessarily restrictive. We need a renewed Canadian conversation.
Use of Umbilical Cord Blood for Stem Cell Research Bordet, Sylvie, MSc, BCL, LLB; Nguyen, Thu Minh, BSc, LLM; Knoppers, Bartha Maria, PhD, FCAHS ...
Journal of obstetrics and gynaecology Canada,
2010, January 2010, 2010-Jan, 2010-01-00, 20100101, Volume:
32, Issue:
1
Journal Article
Peer reviewed
Abstract Umbilical cord blood (UCB), long treated as waste material, is today considered a valuable source of hematopoietic stem cells. UCB is used, mostly in children, for the treatment of blood ...malignancies and inherited blood and metabolic disorders. In addition to blood precursor cells, UCB also contains stem cells that can differentiate into other types, such as cartilage, fat, hepatic, cardiac, and neural cells, fuelling speculation about the use of cord blood stem cells for regenerative medicine. Further research is therefore needed to investigate the expanded potential of UCB and its therapeutic use in cell and tissue therapies. According to a recent survey, practices for the procurement of UCB for research vary widely across Canada, so this area may not yet be ready for uniform regulation. However, some harmonization of practices to increase the availability of UCB for research would be useful for Canadian investigators. In this simple-article, we address several important ethical and legal issues relating to the use of UCB in research and recommend guidelines to serve as a source of useful information for researchers. While their legal acceptability may vary across Canada, it is hoped that these recommendations foster more harmonized UCB research practices.
When a patient refuses to disclose genetic risk information to relatives, whether the patient's physician should or may disclose such information without the patient's consent will depend on the ...seriousness, the imminence and the preventability of the risk. The legal landscape around the duty to warn of genetic risk is unclear in Canada, but in some cases the benefits of disclosure may be so great as to outweigh the obligation to maintain confidentiality. In this article we use a case-based approach to address the ethical and legal issues surrounding physicians' duty to warn family members of genetic risk. A significant difference between these cases and cases involving genetic risk is that, in genetics, relatives are not potential victims of the patient's actions: at-risk relatives either carry a genetic mutation or they do not. Moreover, it is doubtful that the law of negligence or the civil law duty to rescue would be expanded to impose a duty in a situation such as Dr. T's. At the same time, because Mrs. B's daughter is also Dr. T's patient, the physician has a duty to answer her questions as fully as possible without breaching Mrs. B's confidentiality. If the daughter were not Dr. T's patient, the physician may still be justified in taking action to prevent harm to the daughter; however, it is doubtful that Dr. T would have a legal obligation to do so in that case, since there would be no physician- patient relationship. If the daughter's family history is complete in her own medical file, Dr. T could discuss the daughter's risks by referring to her family history without discussing her mother's case specifically. If the daughter's medical file does not contain a complete family history, Dr. T could encourage the daughter to take steps to complete her own family history by contacting her family members. The legality of disclosing the family history information in Mrs. B's medical record to the daughter may be as uncertain as is the disclosure of Mrs. B's genetic test information. If the daughter is concerned about her breast cancer risk, Dr. T could also suggest referral for genetic counselling and possibly testing.
Abstract Background In Canada, there are wide variations in services for patients at risk for hereditary breast and ovarian cancer (HBOC), and clinical interventions and recommendations differ ...between regions and/or provinces. National strategies for the clinical management of HBOC exist in the United Kingdom, France, and Australia, and clinical programs in Canada would benefit from similar national recommendations and a consistent approach to clinical management. The National Hereditary Cancer Task Force developed recommendations to address the clinical management of patients at high risk of HBOC and related cancers. These recommendations are based on current practice in high-risk cancer clinics that provide care for individuals with known BRCA1 or BRCA2 mutations. Methods Canadian consensus recommendations were generated by the National Hereditary Cancer Task Force and compared mainly with two recently published guidance documents on the clinical management of women with increased risk of HBOC, one from the United Kingdom and the other from France. After review of these documents and the associated supporting scientific evidence, the Canadian consensus recommendations were modified and rated using predefined criteria. Conclusions These recommendations pertain to (1) surveillance options including breast self-examination, clinical breast examination, breast surveillance by imaging, ovarian cancer surveillance, and surveillance for men; (2) risk-reduction strategies including prophylactic mastectomy, prophylactic salpingo-oophorectomy, and pharmacoprevention; and (3) the use of exogenous hormones. Regular updates should occur as new evidence becomes available.