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. You are born with your genetic makeup.
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, insured, have access to housing or schools. To assume that someone’s DNA will result in a disease or disorder is faulty, misleading and speculative.
Prior to May 2017, the genetic test information of Canadians was not protected. On May 4, 2017, the Genetic Non-Discrimination Act (GNA) received Royal Assent and was passed into law. This historic law, which passed 3rd reading in the House of Commons by a vote of 222 to 60 in May 2017, enabled all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enabled Canada to remain as a leader in genomic research and has already helped to alleviate the fears of Canadians, encouraging participation in genomics research and clinical trials. All Canadians deserve the right to proactively manage their own health and advance medicine without the fear of genetic discrimination. The Genetic Non-Discrimination Act alleviated that fear and removed barriers, by protecting genetic test information.
In late December, 2018 the Quebec Court of Appeal gave it’s opinion that the Genetic Non-Discrimination Act (GNA) does not constitute a valid exercise of Parliament’s criminal law power.
The Quebec opinion is a step backwards at a time when we should be increasing the protection of our genetic information at federal, provincial and territorial levels. Genetic discrimination is an important issue in Canada and a barrier to science, medicine and the health and well being of people living in Canada. The Genetic Non-Discrimination Act addresses this problem and protects the genetic test information for the benefit of all Canadians. It is important to note that the Quebec Court of Appeal just provided an advisory opinion on the specific questions referred to them, however, this opinion does put the Genetic Non-Discrimination Act at risk. The CCGF is exploring all options as we move forward with our lawyers.
- 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.
http://www.michaelkirby.com.au/images/stories/speeches/1990s/vol29/1010-Fundacion_BBV_-_Closing_Statement_-_The_Declaration_of_Bilbao_and_Conclusions.pdf - 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?
Genetic Non-Discrimination Act (GNA) – effective May 2017
The GNA’s prohibitions apply not only to providers of goods and services, but also to anyone entering into or continuing a contract with a person. This would include (among others) all employers. So anyone entering into or continuing a contract with someone is not allowed to require the person to take a genetic test or to disclose the results of a previous or future genetic test.
GNA also prohibits providers of goods or services, and anyone entering into or continuing a contract with a person from collecting, using, or disclosing the person’s genetic test results without that person’s written consent. This is another basic protection of the law, in addition to the protection against someone requiring a person to take a genetic test, or disclose the results of a prior/future genetic test.
Amendments to the Canada Labour Code and the Canadian Human Rights Act (CHRA) – effective May 2017
Amendments made to the Canada Labour Code provide an extra layer of protection for employees of federally-regulated industries, however, all employees and potential employees are protected by the basic prohibitions of the GNA.
Amendments made to the Canadian Human Rights Act (CHRA) have added genetic characteristics to the CHRA.
How do I help ensure the GNA remains?
Help ensure that the Genetic Non-Discrimination Act stays as law and is not overturned. Contact your MP or local government representative and let them know that genetic test information is critical and that the pan-Canadian legislation of GNA is robust and appropriate protection.
Spread the word and ask your friends to join in.