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Some Canadians suffering 'genetic discrimination'
Updated Tue. Jun. 9 2009 8:12 PM ET
CTV.ca News Staff
With medical advances, Canadians can now learn whether they carry the genetic risk for devastating diseases. But that knowledge could come at a price, suggests a study that looked at the growth of "genetic discrimination."
The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington's disease, a degenerative brain disorder for which there is no cure or treatment to slow it.
The children of Huntington's patients have a 50 per cent chance of developing the disease themselves, and doctors can further pinpoint that risk by testing for the Huntington's genetic mutation.
The UBC study surveyed 167 people across Canada who had been tested for the Huntington mutation (83 had the mutation and 84 did not), and 66 people who were at risk for the disease but had chosen not to have the genetic test.
They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.
About 15.5 per cent said they had experienced discrimination among family, particularly when making choices about having children, and 12.4 per cent among social settings, particularly by friends or when establishing a relationship.
"Discrimination in the family must be viewed through a wider lens that captures the profound impact the presence of Huntington's disease and predictive testing can have on the family system," the authors write. "Often when Huntington's disease is present in a family, it becomes part of a family's identity and pattern of behaviour."
There were also a few reports of discrimination in employment (6.9 per cent), health care (8.6 per cent), or public sector settings, such as from the courts or adoption agencies (3.9 per cent).
In total, 40 per cent of the respondents reported having experienced unfair treatment because of their risk of developing Huntington's disease, even though none had symptoms. A family history of the disease, rather than the genetic test result, was the predominant reason they gave for discrimination.
The results are published in the British Medical Journal.
The findings could be significant to the many Canadians who undergo genetic testing to assess their risk for illnesses such as Huntington's or breast cancer. The test results help them make important decisions and to plan for the future, or to obtain preventative treatment.
But Dr. Yvonne Bombard, who led the study while she was a UBC doctoral candidate at the Centre for Molecular Medicine and Therapeutics, says patients need to be warned about the possibility for "genetic discrimination."
"The study provides useful information that genetic professionals can tell people when they are counseling them on obtaining genetic testing," said Bombard, who is currently doing a post-doctorate fellowship in public health genomics and policy at the University of Toronto.
"I would like to see society benefit from the effective translation of genomic discoveries while minimizing the risks such as the inappropriate use of these technologies or information."
Dr. Paul Billings, Director and Chief Scientific Officer for the Genomic Medicine Institute at California's El Camino Hospital, says that over the past two decades, "the explosion of human genomic information" has led to more opportunities for genetic discrimination.
"Dr. Bombard's study illustrates that we need continued research and improved public policy in order to create a safe society for knowing hereditary risks and acting on them appropriately."
Both Dr. Bombard and the principal author of the study, Dr. Michael Hayden, are members of the Canadian Coalition for Genetic Fairness, which promotes awareness and policy protections for genetic discrimination issues in Canada.
At-home prenatal gender test raises concerns
Updated Wed. Jun. 10 2009 9:02 AM ET
CTV.ca News Staff
A new at-home test that can determine the gender of a fetus at 10 weeks with 80 per cent accuracy might sound exciting to some but it worries others.
The Boy or Girl Gender Prediction Test "bridges the curiosity gap between conception and sonogram," claims its manufacturer, IntelliGender. More than 50,000 tests have sold online off the company's website. Now, U.S. drugstore chains CVS and Walgreens have begun selling the test over the counter for US$34.95.
The kit tests a small amount of the mother's urine that is added to a cup and mixed with the kit's "proprietary mix of chemicals" that reacts to certain gender-specific hormones in the urine.
If the test strip turns orange after 10 minutes, it's a girl; if it's green, it's a boy. If multiples are expected, orange will indicate all babies are females, while green means that at least one of the multiples is male.
The manufacturer says the product is about 80 per cent accurate when taken at home, with laboratory results coming in at more than 90 per cent.
IntelliGender insists they can't promise that the test is always right, which is why they post this warning on their website: "IntelliGender does not recommend test users to make any financial, emotional or family planning decisions based on the test results. This includes painting a nursery!"
Medical ethicist Margaret Somerville of McGill University says the test sounds like a nice idea for some, but she worries it could be used for the wrong reasons by others.
"You could use it for a benign purpose - you know, you're curious to know the sex of your baby as soon as possible - or it could be used for sex selection, in that if you identify that the child is the 'wrong' sex - usually a girl - then you might have an abortion. And so it brings us into the whole thorny issue of abortion," she explained to Canada AM from Montreal Wednesday.
"I think there would be quite a lot of people who would use it because they're excited to be pregnant and they're going to have the baby no matter what and they just would like to know its sex. But I also think there are going to be people who do it as early as possible because they don't want a baby of a certain sex."
Somerville worries what would happen if people in countries that have huge problems with sex selection, such as India and China, had access to this test. In such countries, boy babies are greatly preferred for both cultural and economic reasons, and the aborting of girl babies has become common.
"It's not just the loss of those babies, and it's not just the trauma to the women who are forced to have an abortion if it's found they are carrying a girl," says Somerville. "It's also the societal impact, in the lack of women to marry. Later on, all these men have the problem that they can't find a wife. That causes all sorts of problems."
Somerville says some may argue that couples have the right to do what they want in their family planning decisions, but she's not sure she agrees.
"People who are very strongly pro-choice sometimes say that if it's a matter of choice, for no matter what the reason, a woman has the right to choose that she doesn't want this baby. I think that's extraordinarily dangerous. I think it's also an example that the decision of an individual person doesn't just relate to them, it affects society."
Updated Tue. Jun. 9 2009 8:12 PM ET
CTV.ca News Staff
With medical advances, Canadians can now learn whether they carry the genetic risk for devastating diseases. But that knowledge could come at a price, suggests a study that looked at the growth of "genetic discrimination."
The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington's disease, a degenerative brain disorder for which there is no cure or treatment to slow it.
The children of Huntington's patients have a 50 per cent chance of developing the disease themselves, and doctors can further pinpoint that risk by testing for the Huntington's genetic mutation.
The UBC study surveyed 167 people across Canada who had been tested for the Huntington mutation (83 had the mutation and 84 did not), and 66 people who were at risk for the disease but had chosen not to have the genetic test.
They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.
About 15.5 per cent said they had experienced discrimination among family, particularly when making choices about having children, and 12.4 per cent among social settings, particularly by friends or when establishing a relationship.
"Discrimination in the family must be viewed through a wider lens that captures the profound impact the presence of Huntington's disease and predictive testing can have on the family system," the authors write. "Often when Huntington's disease is present in a family, it becomes part of a family's identity and pattern of behaviour."
There were also a few reports of discrimination in employment (6.9 per cent), health care (8.6 per cent), or public sector settings, such as from the courts or adoption agencies (3.9 per cent).
In total, 40 per cent of the respondents reported having experienced unfair treatment because of their risk of developing Huntington's disease, even though none had symptoms. A family history of the disease, rather than the genetic test result, was the predominant reason they gave for discrimination.
The results are published in the British Medical Journal.
The findings could be significant to the many Canadians who undergo genetic testing to assess their risk for illnesses such as Huntington's or breast cancer. The test results help them make important decisions and to plan for the future, or to obtain preventative treatment.
But Dr. Yvonne Bombard, who led the study while she was a UBC doctoral candidate at the Centre for Molecular Medicine and Therapeutics, says patients need to be warned about the possibility for "genetic discrimination."
"The study provides useful information that genetic professionals can tell people when they are counseling them on obtaining genetic testing," said Bombard, who is currently doing a post-doctorate fellowship in public health genomics and policy at the University of Toronto.
"I would like to see society benefit from the effective translation of genomic discoveries while minimizing the risks such as the inappropriate use of these technologies or information."
Dr. Paul Billings, Director and Chief Scientific Officer for the Genomic Medicine Institute at California's El Camino Hospital, says that over the past two decades, "the explosion of human genomic information" has led to more opportunities for genetic discrimination.
"Dr. Bombard's study illustrates that we need continued research and improved public policy in order to create a safe society for knowing hereditary risks and acting on them appropriately."
Both Dr. Bombard and the principal author of the study, Dr. Michael Hayden, are members of the Canadian Coalition for Genetic Fairness, which promotes awareness and policy protections for genetic discrimination issues in Canada.
At-home prenatal gender test raises concerns
Updated Wed. Jun. 10 2009 9:02 AM ET
CTV.ca News Staff
A new at-home test that can determine the gender of a fetus at 10 weeks with 80 per cent accuracy might sound exciting to some but it worries others.
The Boy or Girl Gender Prediction Test "bridges the curiosity gap between conception and sonogram," claims its manufacturer, IntelliGender. More than 50,000 tests have sold online off the company's website. Now, U.S. drugstore chains CVS and Walgreens have begun selling the test over the counter for US$34.95.
The kit tests a small amount of the mother's urine that is added to a cup and mixed with the kit's "proprietary mix of chemicals" that reacts to certain gender-specific hormones in the urine.
If the test strip turns orange after 10 minutes, it's a girl; if it's green, it's a boy. If multiples are expected, orange will indicate all babies are females, while green means that at least one of the multiples is male.
The manufacturer says the product is about 80 per cent accurate when taken at home, with laboratory results coming in at more than 90 per cent.
IntelliGender insists they can't promise that the test is always right, which is why they post this warning on their website: "IntelliGender does not recommend test users to make any financial, emotional or family planning decisions based on the test results. This includes painting a nursery!"
Medical ethicist Margaret Somerville of McGill University says the test sounds like a nice idea for some, but she worries it could be used for the wrong reasons by others.
"You could use it for a benign purpose - you know, you're curious to know the sex of your baby as soon as possible - or it could be used for sex selection, in that if you identify that the child is the 'wrong' sex - usually a girl - then you might have an abortion. And so it brings us into the whole thorny issue of abortion," she explained to Canada AM from Montreal Wednesday.
"I think there would be quite a lot of people who would use it because they're excited to be pregnant and they're going to have the baby no matter what and they just would like to know its sex. But I also think there are going to be people who do it as early as possible because they don't want a baby of a certain sex."
Somerville worries what would happen if people in countries that have huge problems with sex selection, such as India and China, had access to this test. In such countries, boy babies are greatly preferred for both cultural and economic reasons, and the aborting of girl babies has become common.
"It's not just the loss of those babies, and it's not just the trauma to the women who are forced to have an abortion if it's found they are carrying a girl," says Somerville. "It's also the societal impact, in the lack of women to marry. Later on, all these men have the problem that they can't find a wife. That causes all sorts of problems."
Somerville says some may argue that couples have the right to do what they want in their family planning decisions, but she's not sure she agrees.
"People who are very strongly pro-choice sometimes say that if it's a matter of choice, for no matter what the reason, a woman has the right to choose that she doesn't want this baby. I think that's extraordinarily dangerous. I think it's also an example that the decision of an individual person doesn't just relate to them, it affects society."
