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.
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 fire workers.
The fear of discrimination can discourage individuals from making decisions and choices, which may be in their best interest. For example, a father may decide not to have a genetic test for fear of consequences to his career or the loss of insurance for his family, despite knowing that early detection and therapy could improve his health and longevity.
1. 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.
2. 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 this fact, insurance 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.
3. 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 predictive information to help make vital life choices, 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.
4. Fear of genetic discrimination prevents 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 prevent illness and save lives - and not 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.
All Canadians are affected by genetic discrimination. Every person has dozens of genetic differences 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 must be protected, so it is not used to discriminate against people.
A number of international documents oppose the discriminatory use of genetic information:
In Canada, there are no existing legal documents specifically prohibiting genetic discrimination.
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.
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.
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 while the issue escalates. In future, we will be able to predict most diseases to some degree.
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.