Case Studies, and one last office hour!
Hey everyone, I’m starting to feel well enough to resume posting, so here goes.
OFFICE HOURS
I will be having one LAST session (I know, three isn’t hardly enough) on AIM tomorrow evening from 8 to 9 pm. My sn will be BMUNunesco56, once again. Apologies to all those who were looking for me since the last session, but I can only log into a MUN-related sn so many times. 
BIOETHICS CASE STUDIES
This will be the first of two posts regarding case studies to get your brains frying in terms of the issues we will be facing. These are case studies and are by NO means unique to the country talked about in the study. For example, the Chinese case study features laws that are also present in the United States, Canada, Japan, and in most of Europe.
Chinese Screening for Disease in Couples
The Maternal and Infant Health Care Law in China is a major legislative action that ”provides services” for all couples seeking marriage and children regarding screening for potential inheritable diseases and genetic and mental conditions. The law isn’t clear in terms of how mandatory these “services” are, but if a physician determines that a couple has unacceptable risk of passing on disease, he can issue a report banning the couple from marrying until that couple undergoes necessary contraception.
This law is a recurrence of negative eugenics, where a government prevents couples with health risks (mental state, genetic conditions, etc.) from having children. It occured to a great extent in America and Western Europe in the late 19th and early 20th centuries, and many of the laws of that period are still in place today.
Naturally, Americans are repulsed by such practices that are now legal in China (note the diction of my language, even. I tried to make it neutral, but its not). But how do the Chinese think? For the most part, they are in support of this law. Their culture is simply more accepting of practices that conform the individual to the group. Keep this in mind when you try to create some sort of universal and international standard.
Iceland was the first nation to fully map the genomes and the genetic data of every single one of its citizens. The project began as a database covering just personal and other non-scientific data, but impetus from several communities convinced lawmakers to include genetic data as well.
The ease of doing so helped. Iceland has a small population, most of which has interbred for the majority of its history, resulting in very little genetic diversity. Detailed health records have also been taken, so the value of a genetic database seemed very helpful in improving health care in Iceland.
However, there was much protest from groups all around Iceland. This protest centered around issues of abuse of that genetic data, such as genetic discrimination in health care, insurance, and job interviews, violation of privacy, and many others. As of now, the genetic database is complete, and the issue has subsided, for now…
This case is wildly different than what we will be facing, since Iceland is much less diverse than, well, the entire world put together. So if there is protest among people’s that are nearly genetically alike, just imagine the turmoil this testing will have among people who are much more genetically diverse.
Alright, more to come tomorrow!
- Bryan
March 11th, 2008 at 3:03 pm
The Icelantic case-study is an intersting one because it addresses most, if not all issues related to cultural identity, and highlights some additional issues. This case-study highlights an issue of pertinence to South Africa: privacy. South Africa has proven an attractive place for research, particularly AIDS research. Due to possible stigmatization and discrimination surrounding AIDS, privacy is of utmost importance. South Africa finds it revealing that genetic research into diseases without the same sort of stigmatization and discrimination associated with it, as AIDS does, would cause such an uproar.
However, South Africa notes that most of the opposition is a result of privatization of nation-wide genetic data compiling, and that the other issues, such as benefit sharing (through jobs and access to medication) and informed consent, appear secondary.
South Africa believes that it was the way in which the genetic data was gathered and stored and not the action itself that was the problem. UNESCO has started to solve these problems (informed consent and benefit sharing) and should continue to. South Africa does not feel that the gathering of such data should simply be eliminated, just that basic research ethics must be outlined and enforced.
March 11th, 2008 at 6:40 pm
The United States does agree with South Africa that the ownership of the DNA and privatization of it is important but that is also only part of the problem, we have to look at everything overall. There are organizations out there that have strict guidelines on the ownership and issues surrounding the DNA, and the USA is also proud to say that we are members of some of these organizations.
You can also see that from one of the previous articles posted, that we have already made great leaps and bounds in protecting people’s genetic information, not just indigenous people but everyone in our nation and maybe, internationally.
The fact that we have the opportunity to obtain this kind of information and data is valuable, and we should not compromise it, however, we should take steps to make sure that we don’t jeopardize those willing to help contribute to the programs, we must protect our donors and we must look at this issue from all sides.