Dick Sobsey: So, getting into the second half of the 20th century, we had the coming of, really in the 
wake of World War II, the repudiation of 
the most open practices of eugenics, of 
euthanasia, of mass sterilization. And at that 
 time, we had people like Frederick Osborn, 
who were the head of the American Eugenic 
 Society, who began to say, "we can't force 
people anymore, it's not popular, we need to 
 convince them its in their own best interest, 
and we can use things like guilt and shame 
in order to convince people not to have kids 
that have problems." Sheldon Reed is the person 
 who actually coined the term "genetic 
counseling" and he did that when he was 
appointed as the head of the Dype Institute, 
which was an openly eugenic organization, 
 which they referred to as an organization for 
"racial betterment." Here in Alberta, we had 
 Margaret Thompson, who was on the 
eugenic board, also was the founder of the 
medical genetics department here at the U of 
A, and yes Lelani, she did get the Order of 
 Canada in 1988, I looked it up. So, it's 
interesting right now the Canadian Society 
for Genetics each year gives an award for the 
best PhD thesis in genetics, and that's the 
Margaret Thompson award. This is a person 
who authorized castration of people in order 
 to use parts of their testicles for medical 
experiments and was a major figure on the 
eugenics board. So today, most of what is 
happening does not meet the strict sense of 
eugenics in the sense that it's not 
manipulating the gene pool. For example, if 
 somebody decides not to have a child with 
Down's syndrome because of genetic counseling, 
 that child is probably not going to 
have children of their own, so it really has 
no effect on the gene pool. It's proven in part 
by our increased capacity to control life and 
 death. As an example, right now there have 
been both Canadian and US studies that kind 
 of look at deaths in the intensive care 
nursery, and the California one is the one 
I'm most familiar with, and I'm not sure about 
the precise percentages, but basically 
roughly 75% of infants who die in neonatal 
intensive care units don't die in spite of 
 treatment, they die because there's a decision 
made that it's the right thing for them to die 
 at that time. And of those you can divide it 
into cases where medical treatment is 
deemed futile, in other words, treatment is 
withheld, but it's well understood that even 
 if treatment were given that they would not 
survive for very long, and cases where treatment 
 would be effective but it's deemed that 
their quality of life is not adequate, and that's 
 about 20% of the 70% of deaths. So, 
because we have decisions to make, then we 
 have to decide on what basis we're making 
those decisions. If we lived in a world where 
 we didn't have the technology to keep 
people alive, we wouldn't have to make 
decisions about whether or not to keep them 
alive. Racial disparities exist, but I don't think 
 that anybody would say that most of the 
practices that are out there today are designed 
 to improve the race. Certainly much of 
what's done is well intentioned. I don't think 
 that there, if there are any instances, there 
are certainly very rare instances, of people 
who just have malice. I think there are 
instances where there's disagreement about 
 whether it's really in an individuals interest 
or in a family's interest for people to die. 
Continued bias on intellect and a problematic, 
in my view, blur of the distinction of preventing 
 a disease and preventing a person who 
has a disease. So, you can pick any disease, 
like if you wanted to wipe out AIDS and you 
just said "Let's carpet-bomb Africa with 
nuclear weapons" that would end a lot of cases 
of AIDS. But I don't think we would think 
 of that as a curative effect, in the same way if 
we prevent the birth of a woman, women have 
 a much higher rate of breast cancer than 
men have, but I don't think we would think of 
 that as a prevention for breast cancer. But 
in many of these practices, what we do is we 
 end up with the notion that somehow we've 
reduced the disease, or cured the disease, 
 or prevented the disease by eliminating the 
people who might have it. In many case I 
 think certainly my objections is not that people 
have choices to make, but the information 
given is incredibly biased. So, people are often 
given dismal pictures of the outcomes for 
their children. They're told that having a child 
with a disability has tragic effects on the 
family, that it does horrible things to siblings. 
These are not things that are actually supported 
 by research and yet we continue to give 
people information like that in order to make 
 decisions that then we refer to as "informed 
consent." And in many cases what is being 
  described by people is that when they actually 
refuse, that then they're told it's not their 
decision to make anyway. And it's particularly 
problematic when people are told "well, I 
think you should authorize this DNR order" or 
"I think maybe we shouldn't go ahead with 
 this treatment" and then they make a decision 
and then they're told that it's not really their 
 decision to make, that they're being 
overruled by the physician, etc. Another 
 tragic piece of this is that often people make 
those decisions thinking that they actually 
 have control over that, and then later feeling 
guilty because they made a decision that they 
 don't even realize was really somebody 
else's decision. Again, assisted suicide and 
euthanasia, I think, is another example where 
we refer to it as a rational choice, but the reality 
 is it's not more or less rational than 
anybody else's decision to kill themselves. 
And I think if, as a society, if what we want to 
do is say "suicide is ok, and anybody who 
 wants to commit suicide, we'll assist them to 
do it," that may be reasonable, but where we 
 say, "if you happen to be a person with a 
disability or with a terminal illness, we'll 
 help you, because we think that's rational, but if 
you want to kill yourself because your stock 
 portfolio just dropped 75% in the last few 
weeks, we think that's irrational and we'll 
try to stop you." In fact, the only way that 
that's more rational is that we agree with 
the idea that that one person is better off dead 
and the other person isn't. 
That's basically all that I want to say. I 
have to acknowledge my sponsors, and I'll tell 
you that some of this comes from an article 
 that my colleagues and I have put together, so 
I want to give Nancy Hansen and Heidi 
 Janz some credit for some of this content. 
