In this country, Helen MacMurchy was in the forefront of this movement. “I think it’s fair to say she was the most prominent promoter of eugenics in Canada,” says Stephen Azzi, an associate professor at Carleton University. Read more
Several members of the Living Archives on Eugenics in Western Canada project have experienced some of the problems of attempting to get access to personal information from government institutions that create barriers to, or outright denials of, access to information by citing the need to protect the privacy of individuals to whom the information relates. All privacy legislation in Canada, whether federal or provincial, defines “personal information” as being information about an identifiable individual. There are many simple ways to alter records containing personal information, depending on the type of record and type of information, and this can and should be negotiated with researchers, many of whom have already factored privacy protections into their research as part of the ethics approval process.
An interesting piece in last week’s New York Times focused on just these issues, although in the US. New rules affecting researchers dealing with sensitive medical information will offer the necessary privacy protections to subjects who participate in studies or whose information is otherwise made available to researchers. At the same time, researchers are concerned that the new rules will result in limited access to various types of valuable data, such as census data, marketing research, and various types of statistics. Typically, denials of access to such information are based on the premise that even when personal identifiers are removed from the information, individuals can potentially be identified by matching data obtained from other sources. While this may certainly be a legitimate issue, common sense should prevail when dealing with aggregate data, or with historical documents. Unfortunately, in Canada and the US alike, common sense doesn’t always factor into decision making, since denying researchers access to information is often the result of risk management by the institution holding the information, not wanting to be held liable for making mistakes. Usually, the best approach is to draft a research agreement between the researchers and the institution, shifting the responsibility for protecting privacy from the institution to the researchers. However, this depends entirely on the willingness of institutions to assist researchers in the first place. If they are not willing to assist in this way, it may be up to researchers to resort to using standard access to information processes to obtain information for research purposes.
It is in this context that we should remember that access to information and protection of privacy go hand in hand, and both aspects should be considered together. Information relating to identifiable individuals belongs to those individuals, but information that is not identifiable belongs to the citizens, not to the government. And researchers are finding increasingly innovative ways to utilize information and transform it into new types of data that can be used to provide better government services, all with little to no risk of breaching anyone’s privacy when done properly. Institutions should be trying to find more innovate ways of getting such data into the hand of researchers, instead of creating unnecessary roadblocks.
The first peek into Nick Green’s newest play. Undercovered documents the journey of several members of the Edmonton Police Force during the investigations into the Pisces Spa leading up to the infamous raid which took place on May 30th, 1981, an event that shook its way into Edmonton’s queer history. The further they dig, the more questions arise, probing into morality, privacy, and the subjectivity of the law. Are things really black and white? And how does the law function in the grey area?
PERFORMANCE DATES November 15, 2010 – 8pm
TICKETS: Pay What You Will
Tickets available at the door only
Despite the fact that race as a topic of discussion seems to have fallen off the radar of many disciplines over the past few years, it remains a hotly debated topic in the medical sciences. It is astounding how poorly conceived the idea of race is, yet how widely accepted it remains. For example, the PBS program Faces of America traces the biological ancestry of 12 celebrities. In the episode that I saw last night, the discussion revolved around how accurately genetics can be used to determined which geographic racial group one belongs to, in terms of gene frequencies. Each of the celebrities was told how much, in percentages, of their genes came from Europe, Asia, or Africa.
When using such broadly defined categories, how can an assessment not be accurate? As usual, these simple geographic referents became reduced to Black/White, with some reference to Asians and Native Americans being all the same. The most telling part of the program is when host’s genome had been decoded, and his genetic “profile” was revealed, which included discussion of the risk factors for various diseases that were determined by the analysis. The question asked was do you really want to know what diseases you might inevitably develop? If we can continue to convince people that they belong to artificial racial groups, then drug therapies can be marketed to greatest number of people where the risk factors for various diseases can be linked to racial groups. When we reduce human genetic variation to three basic categories, we get a wildly distorted view of how we actually differ biologically, and the real patterns that lie beneath the surface . The end result is selling people medications that they likely will not need.
I first heard about this story on CBC radio this past week. The thing that really struck me about the interview with the owners of the cloned dog, Lancelot, is that they said that even though he looked identical to his predecessor, Sir Lancelot, there was some concern that his behaviour might not be the same. However, what I find to be most interesting is what Lancelot’s owners said about what the ability to clone their dead dog means to them: “It truthfully is amazing to me that this process has come to be and that I am getting, if not my dog, certainly the essence of Lancelot …” Of course, this raises a very simple question: is the essence of an animal (or any living being) manifest in it’s appearance, or in it’s behaviour? For these people, obviously, the fact that their new dog is identical in appearance to their old dog is enough, even if the new Lancelot isn’t able to learn any of Sir Lancelot’s old tricks.
Genomic Research Pioneer Argues Against Race-Based Medicine
This past week,Craig Venter told the New Scientistthat “Race-based medicine doesn’t have any real basis in science.” I have no idea why this story seems to be of little interest to the majority of science journalists, as it has not been very widely reported, but it represents a major milestone in terms of understanding how humans vary biologically. The story stems from a comparison of Venter’s genome with that of DNA co-discoverer, James Watson.
Venter, who loves both competition and controversy, has set himself apart not only from Watson, whose shameful remarks about the intellectual inferiority of Africans severely tarnished his reputation, but also from his old foe, Francis Collins. Venter was the CEO of Celera Genomics when Collins was the director of the National Institutes of Health’s National Human Genome Research Institute. Both Venter and Collins desperately wanted to be the first to decode the genome as part of the Human Genome Project. Despite Collins’ subsequent arguments against the race concept, when the announcement was made in June 2000 that the Human Genome Project had completed an initial decoding of the DNA strand, he stated that the project researchers had used the genes of five different people, representing the major races of humans, and the racial diversity of humans. Even at that time, this seemed to me to be a confusingly narrow view of human population biology.
Yang Peiyi, who recorded the song that Lin Miaoke lip-synced at the Beijing opening ceremonies.
Today’s big Olympic story (see CBC coverage here and National Post coverage here) was not about athletic accomplishments, but rather another lip-syncing controversy. This time, it was something far more disturbing than learning that Luciano Pavarotti lip-synced his performance at the 2006 Torino Winter Olympics. Rather, today we learned that not only did nine-year-old Lin Miaoke lip-synch her performance of “Ode to the Motherland” at the Beijing opening ceremony, but the girl who actually sang the song, seven-year-old Yang Peiyi, was considered not beautiful enough to represent China because of her crooked teeth. According to Chen Qigang, the ceremony’s chief music director, “The reason was for the national interest. The child on camera should be flawless in image, internal feelings and expression.”
In his recent article, The Politics of Ignorance, Kenan Malik quite accurately focuses on some of the problems of race and racial classification in the social and biological sciences. The James Watson debacle that Malik refers to, though a few months old now, serves as a wonderful example of how scientists are influenced by politics. While it is hard to imagine why such a brilliant biologist would make such a nonsensical and profoundly non-biological statement about Africans is beyond me, the key point is that he should have been challenged on this point and given an opportunity to respond rather than having his lectures cancelled. Had that happened, and had he continued to make such ill-informed statements, then the cancellation of his lectures and various institutional appointments would be completely warranted on a scientific basis rather than political.
Talk about race has become taboo in many places, particularly human genetics. In my own discipline, anthropology, we continue to be plagued by the persistent problem of having no alternative. Continue reading →