What are genes?
All living things have genes. A gene is the basic unit of heredity in a living organism and is transmitted from parents to children. Genes are made up of DNA, and DNA is packaged into chromosomes which are spiralled, threadlike particles in the nucleus of cells. DNA contains the instructions for building proteins which control the structure and function of all the cells that make up your body. Genes cannot be changed and are with you throughout your entire life.
DNA is a code similar to the letters of the alphabet. As letters can be grouped into words and have meaning, DNA can be arranged to give messages to the cells in your body. A typo in a word can change the meaning of the word or make a word incomprehensible. Similarly, changes in DNA can alter the message sent to the cells in your body. These changed messages can directly or indirectly lead to disease.
What is Genetic Discrimination?
Genetic discrimination occurs when people are treated unfairly because of actual or perceived differences in their genetic information that may cause or increase the risk to develop a disorder or disease.
For example, a health insurer might refuse to give coverage to a woman who has a genetic difference that raises her odds of getting ovarian cancer. Employers also could use genetic information to decide whether to hire, promote or terminate workers.
The fear of discrimination can discourage individuals from making decisions and choices, which may be in their best interest. For example, a person may decide not to have a genetic test for fear of consequences to their career or the loss of insurance for their family, despite knowing that early detection and treatment could improve their health and longevity.
Why is protection from genetic discrimination needed?
- Genetic discrimination is real and growing:
Cases of genetic discrimination have been documented in Canada and are continuing to grow as more genetic information becomes available.
- Genetic discrimination is unjust:
It is unfair to use genetic information to determine which individuals will be employed or insured. To assume that someone’s DNA will result in a disease or disorder is faulty, misleading and speculative.
Despite these facts, Canadian law permits insurers to require health information and to use it without transparency to determine eligibility, set premiums and manage their risks. Insurers ask applicants to divulge personal health information, including genetic data, and family histories and to consent to have this information verified. Failure to disclose this information can mean that the insurance policy will be deemed null and void or even fraudulent.
- Genetic Discrimination concerns Canadians:
Approximately 91% of Canadians feel that insurance companies should not be allowed access to their genetic information for an insurance assessment. Further, 90% of Canadians opposed the notion that employers should have access to the genetic information of workers or job applicants.
(Government of Canada. Public opinion research on genetic information and privacy. Pollara Research, Earnscliffe Research and Communications. 2003. Ottawa)
UNESCO (United Nations Educational Scientific and Cultural Organization) proclaims that “no one shall be subject to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity”.
Genetic information is unique, personal and private information. It is much more than a standard medical test. It provides information to help make informed life decisions, and is not only about the individual, but also their parents, children, family members, and their ethnic background (eg. Sickle-cell disease, Tay-Sachs disease). Individuals have no control over their genetic makeup. They must earn income and plan ahead for their own care and for the care of their family.
- Fear of genetic discrimination may prevent potential positive uses of genetic information. Fear is preventing people from participating in genetic testing and vital research both of which are critical to understand and treat diseases. Genetic information must be used to treat or prevent illness and save lives – and not be used against people. Genetic testing and research allows people to be proactive about one’s health, career and life decisions, which impact them as an individual, their family and society as a whole.
Who needs protection from genetic discrimination?
All Canadians are affected by genetic discrimination. Every person has dozens of genetic mutations that could increase or decrease his or her chance of getting a disease such as diabetes, heart disease, cancer, Parkinson’s or Alzheimer’s disease. Genetic information is personal and complicated and must be protected, so it is not used unfairly to discriminate against people.
What are the key international policy positions addressing genetic discrimination?
A number of international documents oppose the discriminatory use of genetic information:
- The Declaration of Bilbao (1993) was the first international document to address the human genome. The declaration denounces all uses of genetic information causing or leading to discrimination in work relations, in the insurance domain or in any other sector.
- UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997) proclaims that “[n]o one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.”
- UNESCO’s International Declaration on Human Genetic Data (2003) specifies that “[e]very effort should be made to ensure that human genetic data and human proteomic data are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual or for purposes that lead to the stigmatization of an individual, a family, a group or communities.”
- The United Nations Economic and Social Council’s Resolution 2004/09 on Genetic Privacy and Non-Discrimination (2004) “[u]rges States to ensure that no one shall be subjected to discrimination based on genetic information” and to take the appropriate measures to attain this goal.
What is the regulatory framework governing genetic discrimination in Canada?
In Canada, there are no existing legal statutes specifically prohibiting genetic discrimination.
- Section 15 of the Canadian Charter of Rights and Freedoms guarantees equality and grants each person the right to not be subjected to discrimination. However, the Charter does not apply to the disputes between individuals. It applies only to state actors (disputes between people and institutions).
- The Canadian Human Rights Act protects individuals against discrimination based on disability (Art. 3) and could therefore protect individuals whose genetic information reveals the risk of disease and therefore perceived or imputed disability. However, it is not explicit and the burden is placed on the individual to prove discrimination.
- The Tri-Council Policy Statement recognizes that the risks of discrimination are a part of the risks related to participation in genetic research. Researchers who are carrying out genetic research should reveal possible risks to research ethics boards and participants.
- PIPEDA – Canada’s Personal Information Protection and Electronic Documents Act protects the personal information of individuals, but does not explicitly protect genetic test information.
How can Canada help prevent genetic discrimination?
Canada remains the only G7 country that does not protect genetic test information. Canada requires a genetic non-discrimination strategy tailored to our own unique circumstances. We must ensure that genetic information is used properly and without fear. The federal government must create a level playing field within which all insurance companies can continue to operate successfully and serve Canadians in a fair and equal way. It is critical that Canada catches up to the other G7 countries and protects genetic test information for the benefit of all Canadians.
Other countries have taken steps to eliminate genetic discrimination (i.e., United States, United Kingdom, most countries within the European Union). Federal and provincial privacy and human rights legislation is inadequate – it does not address the concept of “future disability, perceived disability or imputed disability” or prevent discrimination in the first place. Rather, it offers remedies after discrimination has occurred and the fear of discrimination prevents victims from stepping forward. The person who is discriminated must make the complaint and then seek appropriate legal action. The process is often cost prohibitive for an individual who has been discriminated against.
Leadership is required from the Government of Canada. In 2003, the Canadian Genetics and Life Insurance Task Force, was convened to find a Canadian solution to the genetics and life insurance controversy. The “moratorium approach” was discussed by the insurance industry and yet no action has taken place to date, yet while the issue continues to escalate.
The federal government must create a level playing field, within which all insurance companies can continue to operate and serve Canadians in a fair and equitable way. For the foreseeable future, preventing genetic discrimination would not hurt the insurance industry or penalize individual policy holders.