FR

Position on Genetic and Prenatal Testing Technologies

Context

In taking this position we are concerned with the extremely high rates of termination of fetuses thought to carry disability related traits and the process and flow of research, development, assessment, approval and clinical and health care application of genetic and testing technologies (hereafter referred to as genetic and testing technologies) as well as the associated clinical, health care and public policy regulations and protocols for such technologies. We are further concerned that the protection of women’s reproductive rights, which are recognized and supported by Inclusion Canada, are being used inappropriately and disingenuously as justification for the elimination of fetuses with disability related traits, reinforcing discriminatory and negative attitudes towards people with disabilities rather than the protection of the rights of women.

Purpose

The purpose of this position is to make clear Inclusion Canada’s position and bring detail to Inclusion Canada’s beliefs and values with respect to principles that we believe must guide the processes involved in the production and use of genetic and testing technologies.

Discussion

In taking a position related to genetic and testing technologies, we are motivated by the following concerns:

We are concerned that the pervasive sigma and devaluation of people with disabilities is replicated and reinforced by clinical practice which encourages both overtly and covertly the elimination of fetuses thought to be carrying disability related traits.

We are concerned that within the current practice regime and broader social attitudes towards people with disabilities prospective parents are unduly influenced towards termination of fetuses thought to be carrying disability related traits.

We are concerned that the accelerating trend towards the identification and termination of fetuses thought to be carrying disability related traits will both reduce the diversity present in society and reinforce negative and discriminatory attitudes towards people living with a disability and their families.

We are concerned that with the rapidly advancing field of research and development of genetic and testing technologies, and with associated health care and public policy regulation and practice, there is a lack of guiding values and principles to recognize and protect against negative impacts on people with disabilities and their families including:

  • Continued and systematic devaluation of persons with disabilities;
  • The danger of an erosion of the commitment to provision of needed supports to people with disabilities and their families as a public good; and
  • Similarly, the danger of an erosion of the public commitment to inclusion and diversity.
  • We are concerned that clinical ethics that do guide the current flow of research, development, approval and application of such technologies are based on a limited notion of personal autonomy and consumer choice without recognition of prevailing power structures that influence and manufacture demand for such technologies and reinforce a perceived duty to access such technologies as a matter of routine prenatal care.
  • We are concerned that although this is an issue with far reaching public policy implications, there are not public spaces for discussion and negotiation of the potential impacts.

Given these concerns; and

Reaffirming our belief in the value, dignity and contribution of all human beings including those with disabilities,

Inclusion Canada opposes the selective termination of fetuses based on the presence of disability related traits;

Inclusion Canada opposes the continued investment of public funds in the expansion of genetic and related pre-natal tests for disability related traits while the current climate of prevailing negative attitudes towards people with disabilities remains the norm and calls for such funds to be redirected towards providing an adequate system of supports for the inclusion of people with disabilities within society;

Inclusion Canada renews its call for fair, balanced and disability positive information to be provided to both clinicians and prospective parents on the value, contribution and dignity of persons with disabilities within society;

Inclusion Canada opposes the use of pre-natal testing when conducted in a way which condones, supports and reinforces discriminatory or negative attitudes and practices towards people with disabilities and women through selective termination and calls for strict regulation to ensure such usage is eliminated. Inclusion Canada will continue to work with key stakeholders to revise public policy, clinical practice and broader social attitudes in line with the above position.

Discussion:

Why not call for an outright ban on testing for disability related traits and termination of fetuses thought to carry them?

While our opposition to the termination of fetuses based on the presences of disability related traits would seem to lead naturally to a call for a ban on testing and termination, several factors mitigate against this position.

First, on a practical level, disability is a broad, non-­‐specific concept. Testing is not done for disability per se, but rather for specific conditions, some of which may be disability related and others defined more as diseases or illness. In this context we would either have to ban all testing or create a list of those conditions for which we oppose testing. In the first case we would deny prospective parents the possibility of both preparations for the birth and potential interventions which may mitigate the condition. In the latter case, we would be faced with a large and ever expanding set of conditions and be forced to determine which constitute a disability and which are not and in essence be placed in the very position we are arguing against, that is, determining who is worthy of life.

Complicating this first practical issue is the fact that it is not necessary to provide the reasons for terminating a pregnancy. Advancing a position against testing or selective termination on the basis of disability, would encounter similar practical issues as those encountered by groups that wish to advance a ban on selecting for sex.

A second problem with a call for an outright ban is more theoretical, that is the conflict over the rights of prospective parents to comprehensive pre-­‐natal care and information, women’s reproductive rights and the rights of persons with disabilities to live in an inclusive society where their genetic characteristics are not devalued as a matter of public policy—i.e. public funding of screening and testing for such traits, defining them as abnormal, and funding genetic counselling which may encourage termination on that basis. While questions of rights are often ones of balance, this ‘balance’ is partially complicated by the fact that fetuses under Canadian jurisprudence do not have rights. In essence an outright ban on testing would privilege one set of rights over these others.

A related concern has to do with liability issues. To actively withhold information or readily available tests from prospective parents would engender wrongful birth claims against the health care practitioners and potentially the State for failure to provide optimal pre-­‐natal care. While the latter case would be debatable it is almost certain to engage the State in a lengthy and complex legal challenge which they are unlikely to want to take on.

A final concern is more political. The advance of equality rights cannot be achieved without solidarity between disadvantaged groups. Rightly or wrongly in this case, a call for a ban on testing and/or terminations would be seen as a challenge to women’s reproductive rights. This has become more acute of late with those opposing women’s reproductive rights using the pretense of protecting persons with disabilities in order to restrict women’s reproductive rights. A more productive approach would be to engage the women’s movement in discussions on the need to ensure that pre-­‐natal technology is not used to knowingly or otherwise, to reproduce discriminatory norms through the elimination of female or disabled fetuses. This would lead to stricter regulation of health

This would lead to stricter regulation of health decision making and genetic counselling processes rather than an outright ban on testing or termination.

Ultimately no ban on testing or termination will address the root cause of the problem, the pervasive negative attitudes towards disability. On the other hand, if we continue to work towards a society which values diversity in all its forms, the need for a specific response to pre-­‐natal testing and termination will be reduced. While the goal of a fully inclusive society remains elusive, this remains the only real solution to the problems presented by pre-­‐natal testing and the elimination of fetuses with disability related traits.

Resolution 2013-2 : Inclusion Canada Position on Genetic and Prenatal Testing Technologies

BE IT RESOLVED THAT Inclusion Canada opposes the selective termination of fetuses based on the presences of disability related traits;

Inclusion Canada opposes the continued investment of public funds in the expansion of genetic and related pre-natal tests for disability related traits while the current climate of prevailing negative attitudes towards people with disabilities remains the norm and calls for such funds to be redirected towards providing an adequate system of supports for the inclusion of people with disabilities within society;

Inclusion Canada renews its call for fair, balanced and disability-positive information to be provided to both clinicians and prospective parents on the value, contribution and dignity of persons with disabilities within society;

Inclusion Canada opposes the use of pre-natal testing when conducted in a way which condones, supports and reinforces discriminatory or negative attitudes and practices towards people with disabilities and women through selective termination and calls for strict regulation to ensure such usage is eliminated.

Inclusion Canada will continue to work with key stakeholders to revise public policy, clinical practice and broader social attitudes in line with the above position.

Passed by Inclusion Canada membership at the December 1, 2013 Annual General Meeting.

Position Statement

All persons have a right to self-determination and autonomy irrespective of disability. All adults are presumed to have capacity and are entitled to the decision-making support necessary to exercise capacity. Decisions made interdependently with family, friends and trusted others chosen by the individual will be recognized and legally validated.

All people, including people with an intellectual disability, have a right to enjoy and exercise legal capacity – or the right to make personal life, health care, and financial decisions – on an equal basis with others, without discrimination based on disability.

All persons have a will, and this will is capable of being interpreted to form the basis for competent decision-making. People are entitled to the support and services necessary for full participation and equality. The provision of such supports will lessen the need for legal intervention in decision-making.

People’s decision-making rights should not be infringed by liability and other interests of third parties. Third-party interests do not provide a valid justification for removing a person’s decision-making rights.

Third-parties, however, must be able to rely on the validity of decisions made through supported decision making arrangements. They are considered the decisions of the adult and will be binding on the adult with a disability unless the third-party is aware the support person is acting improperly. This must be recognized in legislation.

People with intellectual disabilities must be assured access, with appropriate safeguards, to needed supports. These supports must include representatives and support networks – people who are legally recognized to assist a person in making decisions and/or represent them in the decision‐making process. Such support must be based on a supporter’s relationship of personal knowledge, trust, and commitment to the individual’s well‐being. The supporter must respect and act upon their best interpretation of the person’s will and preferences.

Guardianship

Imposed guardianship arrangements must be abolished everywhere in Canada. An individual who is denied the right to exercise their legal capacity loses the opportunity to make or be involved in decisions that affect their life. In many provinces, a person who is denied the right to exercise their legal capacity will have a substitute decision-maker appointed to make decisions for them. While substitute decision-making may be necessary for decision specific, time-limited exceptional circumstances (such as when decision making supporters are not available), many potential negative impacts can occur when individuals lose the right to make their own decisions.

These are:

  • Loss of Rights: Once a substitute decision-making arrangement is in place, individuals lose the right to make their own decisions. The substitute decision-maker needs to act in the “best interest” of the individual, but they do not necessarily need to consider the individual’s will and preferences.
  • Misuse of Power: Once substitute decision-making arrangements are created, there is usually minimal monitoring or oversight of the decisions made by the substitute decision-maker, even if those decisions result in misuse of power or even abuse. Substitute decision-making powers may be misused without intent simply due to the complexity of the law or misunderstanding between the parties.
  • Barriers to Challenging Substitute Decision-Making Appointments: Once a substitute decision- making appointment is put in place by a court it is difficult to challenge or revoke. The only effective recourse is through the court system, and this is costly and intimidating.
  • Negative Impacts on Physical and Mental Health: Research indicates that substitute decision- making mechanisms can have negative impacts on the individual for whom the decisions are being made including:
    • diminished functional ability, health and well-being;
    • social isolation;
    • loss of self-esteem and feelings of hopelessness and incompetency;
    • feelings of being demeaned and socially stigmatized; and
    • financial abuse, overbroad application of substitute decision-making powers, physical abuse and neglect, restriction on voting rights, and restricting people on enjoying their sexuality and sexual identity.

Policy Context

People with intellectual disabilities are extremely vulnerable to having their legal capacity restricted or removed altogether. Slightly more than half of people with intellectual disabilities report they make none or only some of the decisions about their everyday activities. Across the country, there is uneven access and recognition of supported decision-making. In all places, reliance, formally or informally, on substitute decision-making arrangements and guardianship remain far too commonplace.

Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognizes that all persons with disabilities enjoy legal capacity on an equal basis with others; it also secures the right to access and use support that may be required to exercise legal capacity.

Canada’s ratification of the CRPD included an interpretive declaration and conditional reservation saying that “Article 12 permits supported and substitute decision‐making arrangements” and “Canada reserves the right to continue to use substitute decision‐making arrangements in appropriate circumstances”.

On April 3 and 4, 2017, Canada appeared before the United Nations Committee on the Rights of Persons with Disabilities (the Committee) to review its initial report on the Convention on the Rights of Persons with Disabilities (CRPD). The Committee issued its concluding observations for Canada on May 8, 2017, recommending that:

in consultation with organizations of persons with disabilities and other service providers, [the Government of Canada] take leadership in collaborating with provinces and territories to create a consistent framework for recognizing legal capacity and to enable access to the support needed to exercise legal capacity. It also recommends that the State party take steps to remove exclusionary provisions from federal statutes and to introduce provisions for supported decision-making in the Bank Act, the Income Tax Act and other statutes as appropriate.

The regulation of legal capacity varies from province to province for persons with intellectual disabilities, whether in their living situation, a healthcare context, at the bank, or so many places where it’s questioned.

Legal Capacity and Mental Capacity

The concept of legal capacity (the right to decide), identified in Article 12 of the CRPD, is often directly linked with the concept of mental capacity (the ability to make decisions independently). This link has been the foundation of substitute decision-making laws, and has directed court decisions around substitute decision and guardianship applications for many years. However, these concepts are separate and distinct, legal capacity relates to the rights of an individual, and mental capacity is about an individual’s ability to make decisions and often is related to meeting a certain threshold, which is often the ‘understand and appreciate test.’

The CRPD recognizes that these two concepts are fundamentally different. Exercising one’s legal capacity has a lot to do with how an individual is supported to make decisions. To recognize and enjoy legal capacity, we have to find other means by which people can meet the test of mental capacity in decision making. This is where access to accommodations, support, and supported decision-making is critical.

Accommodations, support and supported decision-making create a framework around the individual that allows them to meet the mental capacity test.

The test for mental capacity is not being changed with these elements in place. Supports are adjusted to meet mental capacity tests through an interdependent decision-making process. The requirement for legally valid decisions is not changed. How the condition is met is changing. It needs to be recognized that there are many ways that individuals can meet the requirement with the involvement of supporters and under different types of accommodations. In essence, it is how people recognize legally valid and binding decisions that individuals can make through various processes. Individuals must have the right to exercise their legal capacity in two ways:

  • Independently – where the person demonstrates that with the appropriate supports and accommodations, they have the capacity to understand information and appreciate consequences of a particular decision, and thus decide on their own; or
  • Interdependently – where, together, the person with recognized decision-making supporters has the capacity to understand information and appreciate the consequences of a particular decision, guided by the principle of the ‘best interpretation of the person’s will and preferences in the circumstances.’

Within the interdependent and supported decision making process, adults may choose to appoint their own supporters, or alternatively when this is not possible, trusted individuals may apply to an appropriate authority to become decision-making supporters.

Twenty-three percent (23%) of Canadians identify as having a disability. As our population continues to age, people will increasingly face questions about their ability to make decisions about themselves and to assert their autonomy. Disability is not a movement in decline – at some point in the near future, it may play a role in any or all of our lives.

Safeguards

Article 12 provides that measures related to the exercise of legal capacity provide effective and appropriate safeguards to prevent abuse. Within supported decision-making arrangements, safeguards may include the appointment of monitors or other measures such as limitations on the types of decisions that can be made and/or higher thresholds to validate certain types of decisions.

Discussion

Most adults enjoy the ‘legal capacity’ to make their own decisions, enter agreements with others, and be recognized and respected by others. However, people with intellectual disabilities often have their legal capacity questioned by others and sometimes removed from them.

This can happen when an individual makes a personal decision, like where they want to live, health care decisions requiring informed consent and/or financial decisions. When this happens, a person can be required to have their legal capacity ‘tested,’ and sometimes it is removed. In these cases, another person or agency is given the authority – as a ‘guardian,’ trustee, or other substitute decision-maker – to make decisions on behalf of the individual.

As a result, people have been denied having a voice in their own lives; they have no power to make, control, or even influence decisions about important issues. We believe that legal capacity is a fundamental right, regardless of the perceived level of disability or support required to exercise it. No one should be excluded from making decisions about their lives. People with significant support needs or those who do not communicate or express themselves in ways that are easily understood by others must have a continued presence in the decision‐making process. This ensures that, in most cases, their will will be discernible, and that must be respected. Our legislative frameworks must ensure that the right to decide is also recognized and supported for people with significant support needs.

The problem with substitute decision‐making is not only that it removes the right to decide, but that it does so often against the person’s will and sometimes without their knowledge. This denies people a voice in their own lives and results in the social perception by others that the individual is not a full person but rather an object to be managed by others. This denial of personhood, this objectification, marginalizes people with disabilities, making them more vulnerable to abuse by others.

In Canada, provincial/territorial governments largely regulate provisions related to legal capacity and substitute decision-making. Reform is required in provincial/territorial laws and policies to assure the right of adults to act legally independently or interdependently and to access the supports required to exercise their legal capacity.

Many provisions regulate or affect legal capacity at the federal level – for example, the Income Tax Act, the Canada Revenue Agency, the Registered Disability Savings Plan, and the Privacy Act. A number of these provisions require the ‘contractual competence’ of adults in order to manage their affairs. None of these provisions include an explicit requirement to presume the legal capacity of a person or to provide accommodations or supports in the related decision‐making processes. Our concern is that the absence of such measures places at risk the full recognition of the legal capacity of persons with intellectual disabilities.

The CRPD, Canada’s reservation on Article 12, and the uneven development of supported decision- making legislation across the country call for ongoing study, dialogue and advocacy to achieve a consistent and up‐to‐date legal framework at all jurisdictional levels. This framework must establish the validity of supported decision-making and incorporate the human rights principles of accommodation and respect for differences.

We are over a decade past Canada’s ratification of the CRPD. Collectively, provinces and territories have not yet reformed their laws to address the requirements of CRPD Article 12 in recognition of the right to the exercise of legal capacity. Nor has the Government of Canada taken the leadership called for by the UN Committee or taken steps to remove the reservation on Article 12. This lack of action on the part of governments sends a message that people with intellectual disabilities cannot count on equal respect and recognition.

Canada’s Accessible Canada Act came into force in July 2019. The Act’s preamble makes specific reference to Canada’s commitments as a State Party to the CRPD, and the Act’s principles recognize that:

(a) all persons must be treated with dignity regardless of their disabilities;

(b) all persons must have the same opportunity to make for themselves the lives that they are able and wish to have regardless of their disabilities;

(c) all persons must have barrier-free access to full and equal participation in society, regardless of their disabilities;

(d) all persons must have meaningful options and be free to make their own choices, with support if they desire, regardless of their disabilities;

(e) laws, policies, programs, services and structures must take into account the disabilities of persons, the different ways that persons interact with their environments and the multiple and intersecting forms of marginalization and discrimination faced by persons;

(f) persons with disabilities must be involved in the development and design of laws, policies, programs, services and structures; and

(g) the development and revision of accessibility standards and the making of regulations must be done with the objective of achieving the highest level of accessibility for persons with disabilities.

These principles provide a critical statement of accessibility and its national significance. Given the precise correlation between a barrier-free Canada and the exercise of legal capacity, it is time for action. It’s time for the Government of Canada to begin to recognize the principles of the ACA through the following ‘Calls to Action’.

Inclusion Canada’s Call-to-Action

Federal and Provincial/Territorial governments that require people to independently meet the cognitive test of capacity violate the equality rights of people who may need to exercise their right to make decisions interdependently. Governments must recognize that people can exercise legal capacity independently or interdependently. They must work together to develop the legislative/policy/program framework to ensure people have access to support and reasonable accommodation they require to act legally independently or interdependently through supported decision making arrangements.

Canada has signed and ratified the CRPD. The Supreme Court of Canada has cited the important role of international human rights law as a critical influence on interpreting the scope of domestic legislation such as the Canadian Charter of Rights and Freedoms. Canada has been called upon by the UN Committee on the Rights of Persons with Disabilities to take leadership in collaborating with provinces and territories to create a consistent framework for recognizing legal capacity and enabling access to the support needed to exercise legal capacity. This initiative is to be done in consultation with organizations of persons with disabilities and other service providers.

Accessible Canada Act principles mandate the Government of Canada to take leadership and protect the right to exercise legal capacity. Section 6(d) of the Act contains an explicit statutory recognition of the right to exercise legal capacity. The Government of Canada now must take an active role in building supported decision making and legal capacity mechanisms within the Government’s own architecture, building out Federal accessible legislation, pushing the agenda as the model to provincial and territorial governments who continue to lag on the issue.

The Federal Government must take leadership to protect the legal capacity of people with intellectual disabilities by:

  1. Amending the Income Tax Act, the Bank Ac t and other Federal legislation to recognize formal and informal supported decision‐making mechanisms.
  2. Recognizing supported decision-making as sufficient authorization to open and manage a Registered Disability Savings Plan.
  3. Immediately establish a public education and awareness campaign that brings light to legal capacity issues and their national significance. This campaign must encourage fulsome engagement and development from collaborative partnerships to identify and address barriers to the right to legal capacity across Canada. This must include a review of barriers that exist in all forms of law and policy both nationally and at the provincial/ territorial level.
  4. Calling for Federal/Provincial funded community initiatives around legal capacity, initiatives that build on the depth of legal capacity research and work of the last decade.
  5. Working with its provincial and territorial partners to take the necessary steps to lift Canada’s current reservation under the CRPD Article 12 as soon as possible.
  6. Providing financial support for implementing a supported decision-making infrastructure that may be required across the country. This could include either direct financial support or support to provinces and territories to properly implement and execute supported decision-making regimes.
Community-led Initiatives for SUPPORTING THE RIGHT TO DECIDE: A Framework for Design and Implementation

The ‘framework for design and implementation tool’ as developed by IRIS (Institute for Research and Development on Inclusion and Society) is part of a series of resources. This series was developed with the goal of helping create communities where all people can be supported to exercise their right to decide. It outlines the ‘core functions’ that are associated with supporting people in decision making and provides the framework for implementing these core functions.

Community-led Initiatives for SUPPORT THE RIGHT TO DECIDE: A Readiness Assessment Tool

The ‘readiness assessment tool’ is another tool developed by IRIS that is part of this series of resources.  This tool outlines the ‘core functions’ that are associated with supporting people in decision making, and is designed to assist community organizations assess their readiness to implement these core functions.

MY LIFE, MY DECISIONS: Supporting the EQUAL RIGHT TO DECIDE for people with Disabilities

This document provided an overview of a detailed course for community actors as created by IRIS. The course introduces concepts and strategies to assist community actors in designing and implementing community-based initiatives to support people with intellectual disabilities to have power, choice and control in their lives.

Talking about Legal Capacity: Introduction to the Conversation Guide (Part I)

This is Part 1 of a 2-part series on having a conversation on legal capacity. This series was developed by our partners at People First of Canada. This document is an introduction to legal capacity and is designed to prepare you for part 2 of the series – a conversation guide for legal capacity. It gives an overview of what legal capacity is and how it affects people with intellectual disabilities. It also outlines what the conversation guide will discuss.

Let’s Talk about Legal Capacity: A Conversation Guide (Part II)

Part 2 of a series on legal capacity. This document serves as a plain language conversation guide for people looking to start a conservation about legal capacity and better understand the right to choose. It provides background information about legal capacity is an easy to understand format and how it affect people with intellectual disabilities and their families.