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More Information:

When I initially took on this project to research genetic discrimination I knew it would be a big one. However, I did not anticipate just how much information there is out there on this topic and the wide range of areas that it affects. I have focused on genetic discrimination in its most basic form involving discrimination from business and the insurance industry mainly, but there are so many more areas for study. Policy needs to be developed in every area to better protect and use genetic information. If you are interesting in looking up related topics here are some key words to start your new search:

– genetic privacy laws and right to disclose

– genetic rape

– genes and the criminal code

– genetically modified food

– genetics and the environment

These are just a few starting points and the links to the right will also provide you with more information on these topics and many more.

Finally here is a link to a discussion about the future of genetic discrimination and its applications. It is a rather long video, about an hour, but very interesting.

http://vimeo.com/2174687

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The Future

Now that I have researched a number of different areas of genetic discrimination, watched countless videos from policy makers and experts on what needs to be done it’s time to draw my own conclusions. I am a bit torn on wanting to stick with a more utilitarian perspective that we need to use this technology to optimize the benefits for humankind and if some become discriminated against in the process then so be it. However, for some reason my gut just doesn’t like this. There needs to be some sort of protection, especially when considering the immensity of the issue. Since genetic information is so personal we need to be respectful of each individual when working with it, hence I think the idea of Bill C-508 is a good one. By included genetic discrimination in our Human Rights Act this is the perfect way to establish some protection rights for individuals while still allowing research to continue relatively unaffected. I think genetic research is important and with it being so new it needs to be able to grow and not be hindered by too much policy. As more research is conducted more inclusive laws may need to be created, however establishment in the CHRA will ensure the basic right of freedom from discrimination to all Canadians throughout this process. I also like the idea of an international genetic discrimination human rights act, like the one discussed in other posts by the United Nations. These types of documents highlight the understanding that genetic discrimination is an issue that affects everyone, regardless of other factors such as location, age, or gender. As states work towards further integrating international institutions and give these organizations more authority, international law will become further established. This is important since many countries are pursuing genetic and biotechnology development protection from discrimination really only works if it is applied to all people in the word, since we all the same species. If one country or one group of scientists takes things in a harmful direction everyone could feel the implications since we are all of the same species regardless of borders, or cultures.

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Learning from History

There are many ethical concerns that are raised from the development of biotechnology and advancements in genetic science. Ethical concerns range from what this new, and sometimes not fully understood, technology will be used for, and what consequences result. There have been times in recent history where genetic science has been used in very questionable ways. This is a very recent example of when the ethics behind science is not always looked at from many different lenses; what is scientifically right may not always align with what society deems acceptable. What I am referencing is a practice called eugenics that occurred in the US and around the world in the early 20th century. Eugenics, which is defined by the Merriam-Webster Dictionary as “a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed”. It became popular in the United States, as well as in Europe and Canada and involved the force sterilization of individuals deemed to have ‘bad genes’.[1] Individuals, mainly women, that had mental illness, were of certain cultural background, or were criminals were forced to undergo sterilization under the pretence that the human population needed to be protected from their ‘bad genes’. This was done under the scientific justification of natural selection; those with undesirable genes needed to be eliminated from the gene pool.[2] This brings up one of the biggest moral dilemmas, who is right?

Who were the people that decided this was the best practice for humankind, how did they have the right to make such a decision, who told them they had the power to do so, and that they were right?! We really do not know, as we don’t know in so many cultural decision. How do certain groups have the ability to push their views on others? In the case of eugenics natural selection was the basis for justification, in fact this can be seen as a cultural belief itself, not everyone believes that natural selection is right, let alone should be applied to humans.

In the end eugenics came to a halt after World War II when it had been taken to the extreme during the holocaust and people saw the ethical issues with this type of science.[3] But what would have happened if WWII never occurred, a holocaust situation may have been the final outcome. It is difficult to define a stopping point, and when things have gone too far, especially since so many scientifically proven justifications can be used. There are many other points in history where people used different theories, mainly religious, to justify what they were doing. For example the slave trade was allowed since it was included in the Bible and for so long civilizations had used this to justify it, now when looking back we see how wrong that was. We cannot let this happen again, humans have proven themselves throughout history to take things too far and it is not until the damage is done that we realize what was going on. Genetic and biotechnology certainly has the potential for such outcomes.

The idea of including genetic discrimination in the CHRA could be seen as a moral decision partially based on the idea cultural relativism, however it must adapt with time. Cultural relativism uses the idea that “standards of right and wrong are created by people”.[4] Cultural relativism is one of the most popular theories currently used to determine outcomes of moral decisions. It allows moral decisions to be examined through a number of lenses and takes into account that there is no right answer that is universal throughout time; everything is relative! By including genetic discrimination in the CHRA all individuals will be given the same protection from the potential harms of genetic technology however it still would provide room for science to continue developing as time goes on.

[1] Why We Need a Genetic Bill of Rights: Rights and Liberties in the Biotech Age. Ed. Sheldon Krimsky, and Peter Shorett. Lanham: Rowman & Littlefield Publishing Group Inc., 2005.

[2] Why We Need a Genetic Bill of Rights: Rights and Liberties in the Biotech Age. Ed. Sheldon Krimsky, and Peter Shorett. Lanham: Rowman & Littlefield Publishing Group Inc., 2005.

[3] Why We Need a Genetic Bill of Rights: Rights and Liberties in the Biotech Age. Ed. Sheldon Krimsky, and Peter Shorett. Lanham: Rowman & Littlefield Publishing Group Inc., 2005.

[4] Stephen A. Satris, “Student Relativism,” Teaching Philosophy 9 (Sept.1986) (3):193-200.Pp 55.