Wednesday, July 19, 2006

Distorted Conversations: On and Offline Explorations of Genomic Art

About the project (please read!)

Principal investigator: Holly Longstaff under the supervision of advisor Dr. Michael McDonald at the W. Maurice Young Centre for Applied Ethics through the University of British Columbia (UBC), 227 - 6356 Agricultural Road, Vancouver, B.C. V6T 1Z2, telephone # 604-822-8625.

Purpose: This art project will provide online participants with an opportunity to anonymously share their hopes and concerns about pre-implantation genetic diagnosis (PGD) by participating in online conversations contained on a blog website. These online conversations will also spark dialogue and debate amongst observers who view the final installation (described below).

Study procedure: Portions of the online conversations will be converted into minuscule text and adhered to petri dishes that would typically be used during PGD procedures. These dishes will be piled up around a microscope for the second offline installation portion of the piece. Observers of the installation will then be invited to join in this distorted conversation through the aid of the microscope. In this way, the offline conversation mimics actual PGD procedures and every aspect of the online and offline portions of the piece are controlled by and manipulated through PGD-type technology. This piece will build on the work of genomic artists like Paul Vanouse, Eduardo Kac, & others involved in exhibitions like gene(sis).

· All documents produced during this research study will be protected by computer password (in the case of digital data) or by locked drawer/filing cabinet (in the case of hard-copy data).

· Please be aware that if you are contributing to the blog on a public computer or in a public space, others may be able to view your comments over your shoulder. You should use a home computer if you want additional privacy. In addition, there is always a risk that computers can be hacked.

· If you become upset or have second thoughts about sharing your personal thoughts, you may remove your comments at any time by pressing the trashcan icon in the corner and clicking on delete.

· You never have to provide your name or any information about yourself. Selected blog comments for the final installation will be pooled together and will not be linked to any individual. However, strict confidentiality cannot be maintained because you are inserting your views into a blog site that can be viewed by anyone.

· If you have any further questions please contact UBC’s Centre of Applied Ethics at 604-822-8625. If you have any concerns about your rights as a research participant please contact the research subject information line at UBC’s office of research services at 604-822-8598.

Consent: If you participate in this art project, you are agreeing to have selections of your comments included in the art project and papers about the project. Please be aware that your participation is entirely voluntary. You may leave at any time without jeopardizing your class standing, employment, or further access to UBC events or studies.


Anonymous Marguerite said...

PGD is a good idea, because people who are going to do this (IVF) are desperate to have a child. They deserve to have a child free of any genetically transmitted diseases. The sperm may not necessarily be that of their significant other (as I understand it). Intelligent people would not have a child if they thought the child's genetic history had medical risks. The procedure itself is enough risk.

11:14 AM  
Anonymous Alyson said...

This comment has been removed by a blog administrator.

11:22 AM  
Anonymous Alyson said...

While i recognize the positive potential for improved birth outcomes, i can't help but think this procedure and the ideology surrounding it seems akin to topics Aldous Huxley would explore in a cautionary tale. The parallels with theories of eugenics cannot be denied, since the ultimate goal of this procedure is to produce children who are free from genetic "flaws". This practice also runs the risk of opening doors for further genetic manipulation--will choosing the sex of our babies be the next logical step? I have no delusions about the usefullness technology, but as our technological abilities advance, we must continue asking ourselves these difficult questions. If we do not, we may become a society that essentially manipulates life simply because we can.
I'd also like to add that by giving this power to the general public, a value judgement is made about others living with the diseases or "abnormalities" that are being engineered out. We are already able to choose whether an embryo develops into a child--whether to bring a life into this world or not. When we start making decisions about what type of life that is, I personally feel we are on morally shaky ground. I see no real need for this procedure to be legalized. This issue is, in fact, quite different from abortion, as these women have clearly already decided to reproduce.
Although the current laws seemingly attempt to avoid creating a commodity out of human life, I can't help but think that there would be an element exclusion to this. While i know very little about the cost of in vitro fertilization, I'm under the impression that it's fairly expensive, accompanied by costly drugs and technology. So, if the socio-economic class of a person determines whether they are likely or able to undergo in vitro, it follows that the more affluent the person, the more able they are to choose whether to "mold" their offspring, so to speak.
On the other hand, if this technology was used to merely identify a child's potential health problems, than perhaps it could better prepare parents for the road ahead.
This is an extremely interesting issue that I think has many ethical implications for society.

11:42 AM  
Anonymous african, or european swallow said...

There was a movie about a topic quite similar to this, I believe, "Gattaca", it was?

To think that the stuff of fiction in ten short years is so soon realized.

Oh, I hope we're taking baby steps with this genetic diagnostic stuff. The value of PGD does seem quite considerable, but, where does it lead to? Will mothers soon be throwing away their embryos because some flaw caught their attention?

I would hate to be tossed aside like so much genetic junk simply because I have a disposition for high blood pressure, or a trick knee. Of course, it won't come to that for some time. Still, for being a rather poor lot of chromosomes, perhaps someone should do something about our gene pool. Maybe this is the answer.

Oh, but I always wanted to go to space...

1:30 PM  
Anonymous Holly said...

Hi all, there has been some chat about this project on other sites. Please feel free to check it out…

NewGenics: Comments on Genetics & Culture

Rhizome: Connecting Art and Technology

1:42 PM  
Anonymous Gabriel said...

One of my main concerns that I have when I think about parenthood in the future is having a child with problems. I know a lot of it is how the child is raised, but it can really be a lot of trouble for not only the parents but for the child as well if there is some disfunctional attribute that they carry. I know that I can say things that sound very rash, but if I knew my child was going to have some major problem before they were born, I would definitely feel some inclination to abort the birth. I think it is in the best interests of child, parents and society in general if humans are able to live to the fullest extent without being held back by such difficult disabilities. I know people have found ways to cope with their problems, and it is a great tribute to the strength of will found in humans, but is it fair to make people live with a disability if it can be avoided? I would not consider a fetus to be a human life and would not see an issue to destroy it to help others. Another thing to consider is the recent rise of so many health issues because of the way many people live today, exposed to certain products and foods that were not being manufactured 100 years ago. We are endangering ourselves much more than we ever have with our technological advances and it only makes sense that we should counter in any way we can by using other technologies. Considering the financial issues, saying that only upperclass individuals would have this option, perhaps it is important to look at the cost that a disabled child would generate for any family. I don't know what the cost is for the whole PGD procedure but I imagine that with all the money that goes into programs for disabled people and all the troubles the family must go through, the resulting prices would be comparable. If attentions were turned from trying to facilitate the disabled to preventing it in the first place, it could be a more effective endeavor. I'm not saying that people with disabilities should not still be valued members of society, but for the future their problems could be eliminated. I'm sure that most people with life altering disabilities would not wish their problems onto another and would only hope that there was some way to prevent the issue for future generations.

7:01 PM  
Anonymous Anonymous said...

It is a wonderful development which carries with it strong questions concerning morality. I see some very interesting comments though. The only way I could look at it would be from an empathetic viewpoint. If faced with a decision to use IVF would I want to know if my child was going to be healthy? Yes. A mother wants the child she will love and care for to be safe, happy and healthy; this is a basic human desire. If the child I gave birth to as a result of IVF had defects, etc. would I still love it? Yes. But would I terminate the pregnancy if I knew about the defects ahead of time? This is the question. Is this action be merciful or elitist?

8:25 AM  
Anonymous Amy said...

This blog is fantastic, Holly. Thank you. It creates an innovative, safe, and inviting space in which to examine ethical perspectives that are sometimes vastly different and extremely volatile, sometimes even violently opposed. In all ethical debates, what surges to the forefront of any argument for or against an action or a practice (e.g., abortion, euthanasia, PGD) is the notion of what is "right" versus what is "wrong." The distinction between right and wrong is always subjective and always influenced heavily by religious and cultural traditions.

I'm not interesting in communicating what I think is right or wrong...I don't claim to know what is right or wrong for other people. What interests me is trying to understand why people react the way they do to major ethical issues--in this case, PGD. Why do some people support this form of scientific advancement? Why do some resist it? What are their reasons, and, more importantly, where do those reasons come from?

It seems that most of us search for absolute truths about most things in our lives. We want to know the truth--the capital T Truth--about what we should and should not do...and what others should and should not do. However, one can certainly argue against the existence of any and all absolutes (though there certainly isn't room here to stage such an argument), and my sense is that if those with opposing ethical perspectives could realize the origins of their convictions (whether we believe in "origins" is another matter), then maybe conversations about pros and cons of new, controversial forms of research could be more fruitful. All ethical systems have origins. They are not absolutes. Why are they so difficult to challenge and change?

I love the discussion so far. But I have questions...I definitely follow the argument about the cost--potential cost of sustaining a living person who has a disability and potential cost of the procedure to obliterate that person before s/he breathes. But what does that really mean? Does that mean that we value money more than life? Of course, it depends on when one thinks life begins, and everyone's opinion will differ. Who will decide?

And how can we say that an intelligent person wouldn't bring a child at risk of something into the world? Is that true? How are we defining "intelligence" here? What if that person was religious? Are intelligence and religiosity (and/or faith) mutually exclusive? Most of the major world religions seem to oppose genetic tinkering...for various reasons. Interesting that completely different traditions with completely different world views can get together on this issue.

I don't know enough about all the religions to discuss them at length (maybe someone else can contribute), but I can say that the western traditions--theistic traditions--are sometimes troubled because humanity isn't the creator, God is. And decreeing whether or not a person can exist is, to them, rather like playing God.

Eastern traditions are different. There is less of a sense of the individual...I'm thinking Jainism or Buddhism, in particular. All life is connected, and karma is a central, vital concept. As well, the principle of ahimsa, or non-violence, would render it essentially impossible for a Buddhist to condone PGD.

Can we say that none of these people are intelligent? If we do say that, then maybe we should examine where that privileging of science comes from. We'd have to take a good long look at our history of western philosophy for that! What makes science "right" and religion "wrong"? Or vice versa? Anyway, I don't claim to have answers...I'm just offering thoughts.

4:32 PM  
Blogger sink sink socks said...

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11:49 AM  
Anonymous Anonymous said...

In a world where we choose our clothing, hair color, manipulate our bodies through plastic surgery, and so on... it seems this would be the natural proggression of mans growing obbsesion with the perfect image.

I think that imperfections are beautiful....

9:34 PM  
Anonymous Anonymous said...

In a world where we choose our clothing, hair color, manipulate our bodies through plastic surgery, and so on... it seems this would be the natural proggression of mans growing obbsesion with the perfect image.

I think that imperfections are beautiful....

9:34 PM  
Blogger sink sink socks said...

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