- Black Lives Matter
- Conflict of Interest Disclosure Policy for CAGC Organizational Leaders and Staff
- Direct-to-Consumer Genetic Testing
- External Support for Education Programs, Webinar Endorsement and Publications
- Genetic Discrimination
- Informed Consent for Genetic Research
Black Lives Matter
June 4, 2020
Statement from the CAGC BOD to our membership regarding the current human rights crisis affecting Black Members of our personal and professional communities:
As members of the Canadian Association of Genetic Counsellors, we are witnessing a world in pain – the pain of racism and injustice. It’s hard to find the right words, but our hearts are open to the experiences of the Black community.
As a profession, we acknowledge the roots of medical geneticsin the eugenics movement of the early 20th century. We continue to confront the pain and discomfort of this history, and to evolve as a profession with the core pillar of unconditional positive regard for our patients. As written in our code of ethics: Above all, genetic counsellors are expected to demonstrate respect for others, regardless of race, religion, creed, sexual preference, gender, ability, and socio-economic or genetic background. Today, we acknowledge that our aspiration to this ideal has been imperfect, and insufficient.
As professionals who depend on effective communication, genetic counsellors feel lost at times when words seem inadequate. We must remember that a vital part of communication is to listen. We must respect and hear the stories of our members and patients who are living with racial injustice. We must remove ourselves from our places of comfort and privilege and confront our inherent biases, recognizing that we have been shaped by a culture that has done great harm and injustice to many. We must acknowledge that our profession does not reflect the diversity of the population we serve, and we must
work to address this.
We stand with our Black patients and colleagues, and the Black community around the world, in calling for an end to police brutality and racial discrimination. Black Lives Matter. Being anti-racist is an on-going process and we are working on being better allies and better advocates. This conversation is only beginning. There is much work to be done.
Our organization will be making a donation on behalf of our members to the Federation of Black Canadians (https://fbcfcn.ca/) in the amount of $1000.
Financial support by our members could be directed to the following local organizations:
2020 CAGC Board of Directors
Melanie Care Alessandra Cumming Anastasia Richardson Candice Jackel-Cram Catherine Hudon
Deanna Alexis Carere Ingrid Ambus Julia Tagoe Marie-Jacqueline Thomas Sohnee Ahmed
Conflict of Interest Disclosure Policy for CAGC Organizational Leaders and Staff
Direct-to-Consumer Genetic Testing
Canadians are increasingly accessing direct-to-consumer (DTC) genetic testing. DTC testing is defined as a test that is marketed directly to and ordered by the consumer, and not prescribed by the patient’s healthcare provider. The CAGC believes that Canadians have the right to make
informed decisions about DTC testing, taking into account the potential benefits, limitations and risks.
The CAGC believes that commercial providers of DTC genetic testing should engage in responsible marketing of their products, and provide customer support throughout the testing process. Ideally companies should provide consumer access to qualified medical genetics professionals.
Genetic counsellors are uniquely equipped to provide pre- and post-test genetic counselling to individuals who elect to pursue DTC genetic testing. However, Canadian consumers should be aware that the availability of provincially funded genetic counselling services for such tests may
be unavailable or very limited.
Approved by the CAGC Board of Directors: April 11, 2018
External Support for Education Programs, Webinar Endorsement, and Publications
The CAGC is opposed to genetic discrimination. Genetic discrimination is defined as the unfair use of genetic test results or genetic risk determined by family history.
Individuals should not be deterred from seeking genetic services, undergoing genetic testing or participating in genetics research out of concern for genetic discrimination. Individuals should not be coerced to undergo genetic testing by third parties. The decision to have genetic testing is a personal one and should be at the discretion of the individual.
Individuals should be protected from genetic discrimination by employers, insurers and society. The CAGC supports and encourages the immediate development and implementation of legislation to protect the Canadian public from unfair use of genetic test results or family history.
CAGC/CCMG Joint Position Statement on the Process of Informed Consent for Genetic Research
This document has been developed and endorsed by the Canadian College of Medical Geneticists (CCMG) and the Canadian Association of Genetic Counsellors (CAGC) with the financial support of Health Canada. The CCMG and the CAGC are the Canadian certifying bodies for Medical Geneticists and Genetic Counsellors, respectively. Together with provincial and federal government authorities and other professional bodies, the CCMG and CAGC play an important role in establishing standards for the provision of genetic services in both research and clinical contexts in Canada.
The CCMG and CAGC both strive to foster a culture of ethical behavior in the field of medical genetics. The essence of the process of informed consent is to maintain the rights and welfare of research participants and to protect research participants’ personal autonomy. Both the CCMG and the CAGC believe that a non-coercive approach to recruitment of research participants is necessary for an ethically responsible process of informed consent.
Please download the full document for details on how to approach genetic research, and in particular, the informed consent process for genetic research.