Monday, July 6, 2009

Designer Babies - The Slippery Slope of PGD

Designer Babies

The term "designer baby" has been coined by the media as a term that represents the ability for people to custom design their baby, pick and choose the traits and characteristics they desire in a child, through the use of genetic technology. Currently, people are able to pick the gender of their baby with almost 100% accuracy...but what's next? With advancement in genetic research, people will soon be able to choose their child's eye color, hair color, height, body type, IQ and maybe even personality (1).

According to LA's Fertility Institute they will soon be offering parents the ability to choose eye color, hair color and more. Dr. Jeff Steinberg, the director of the Fertility institute states that by next year, the clinic will have determined gender with 100% certainty, and eye color with 80% accuracy on a baby (2).
WATCH THIS VIDEO ABOUT DESIGNER BABIES AND THE CONTROVERSY BEHIND IT.



Are we taking PGD too far when we let people pick their babies gender, eye color, hair color and more? Where do we draw the line? If PGD continues to be unregulated in the US, what do you think can happen?

Poll




The Slippery Slope of PGD

Let’s just start off with a little story about a couple wanting to have a baby like them:


In 2002, a lesbian couple, Sharon Duchesneau and Candy McCullough, wanted to deliberately try to create a child like them, deaf that is. They decided to do so with the use of a sperm donor who was also deaf in order to increase their chances of having a deaf child. However, the sperm bank notified them that someone with congenital deafness would not be able to qualify to be a sperm donor. That didn’t stop this couple, they then asked their close deaf friend to be their sperm donor, in which their son Gauvin was born. Gauvin is not profoundly deaf, his right ear has some hearing and his doctor suggested a hearing aid. By doing so, that right ear could be helped and perhaps aid him with speaking or lip reading. However, Gauvin’s parents refused the use of a hearing aid and instead stated that if he wanted one in the future, they will permit it then. The deaf community does not see deafness as a disability but rather as a cultural identity with communication with sign language. Duchesneau and McCullough were both born deaf and therefore wanted to share their deaf culture with their children (3).

Sharon Duchesneau, Candy McCullough, and Gauvin

I bet you didn’t think that deafness is what we were alluding to by the intro to the story huh? What’s your reaction to that story and the principle behind it? Is it ethically/morally sound to do so? Could this be the beginning of the so-called, ‘slippery slope’ of PGD? Below there’s some interesting tidbits and viewpoints of designers babies with ‘deformities.”

As PGD is an unregulated practice in the US, has PGD been used to intentionally select a “disability?”
  • According to a study at the Genetics and Public Policy Center at Johns Hopkins University surveyed 190 American PGD clinics, which revealed that 3 percent have intentionally used PGD to ‘select an embryo for the presence of a disability.’ (4). However, there is no data reporting a birth from utilizing this technique as of yet.
Viewpoints from Pro PGD for selecting “deformities”:
  • “It turn out that some mothers and fathers don’t view certain genetic conditions as disabilities but as a way to enter into a right, shared culture (4).” Darshak M. Sanghavi, M.D.
  • The belief that selecting a deaf or dwarf child is no different from choosing the gender of the child. Sharon Duchesneau and Candy McCullough
  • “Being deaf is a positive thing, with many wonderful aspects. We don’t view being deaf along the same lines as being blind or mentally retarded; we see it as paralleling being Jewish or black. We don’t see members of those minority groups wanting to eliminate themselves (6).” Sharon Duchesneau and Candy McCullough
  • The concept of being apart of a "Deaf culture" and as members of a "linguistic community." “This idea of a separate language enables the proponents of cultural deafness to describe themselves as, in effect, an ethnic minority – and thus any legislative attempt to weed them out as embryos to be analogous with the most insidious racism (6).” Dominic Lawson
  • Another deaf British couple, whose child is also deaf, told the BBC's disability magazine that "it is important that our culture is passed on from one generation to another ... the threat of losing our culture would be devastating because we have so much to show and to give." (6)
  • Reproduction should be about having children who have the best prospects. But to discover what are the best prospects, we must give individual couples the freedom to act on their own value judgment of what constitutes a life of prospect. “Experiments in reproduction” are as important as “experiments in living” as long as they don't harm the children who are produced. For this reason, reproductive freedom is important. It is easy to grant people the freedom to do what is agreeable to us; freedom is important only when it is the freedom for people to do what is disagreeable to others. John Stuart Mill, philosopher and radical reformer (7).
Viewpoints of Anti-PGD for selecting “deformities”:
  • “It’s just unethical and inappropriate, because the purpose of medicine is to diagnose and treat and hopefully cure disease,” PGD pioneer Dr. Mark Hughes (8)
  • “This would be an abuse of medical technology. Deafness is not the normal state, it is a disability. To deliberately create a deaf embryo would be contrary to the ethos of our society (10).” Professor Gedis Grudzinskas
  • Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., has denied requests to use the process for selecting deafness and dwarfism. "In general, one of the prime dictates of parenting is to make a better world for our children… Dwarfism and deafness are not the norm."(9)
  • "This is an inevitable result of deciding that we allow people to have a choice over what sort of child they are going to produce." "But in this individual case (Sharon Duchesneau and Candy McCullough), I think this is on the borderline of concern about the 'slippery slope' of designer babies."(5) Dr Richard Nicholson, editor of the Bulletin of Medical Ethics.
Just because something is not the norm, does that make it a disability? A deformity? What one individual may view as normal may not be the same to another? Therefore, what is normal? Who defines it?

Poll



Our Thoughts:
Judy: Blue eyes or brown eyes? Check. Blonde hair or brown hair? Check. Girl or boy? Check. Normal hearing or deafness? What? Normal stature or dwarfism??? What what?!? The “what,” and the “what whats,” were my reactions as I stumbled across some of the information from this week’s post! It’s amazing how a technique that can provide so much “good” to the quality of life and humankind can also be the bearer of possible “bads.” I’m not saying that the possible future of using PGD for picking traits or picking deafness is bad but you must admit it’s a pretty scary road that we may all embark on. Especially since PGD is unregulated in our country, allowing the physicians and the patients to decide what practices are morally and ethically appropriate. Sure, it seems to be a pretty benign idea to allow a couple to choose the gender of their child. Let that slide then what’s next… you can choose your child’s eye color, hair color, whether they’re athletic, smart, tall or pretty, and then… deaf couples wanting deaf children, dwarf couples wanting dwarf children, and the list goes on and on. So where do you draw the line? I think that is where the problem exists. One cannot condone one trait that is more socially acceptable, like gender selection, with the hopes that it remains contained for the time being. Ultimately, the limit will be pushed and maybe that limit will be the selection of a blind/deaf/dwarf child. However, not allowing them to do so may lead to an outcry of discrimination against these individuals and they may be correct, especially by allowing other couples to select characteristics they want for their children but not a ‘trait’ these individuals may value. So after a lot of thought and a lot of typing/backspacing/typing…my conclusive thought on this matter is to properly utilize PGD to serve the purpose of medicine: to diagnose, treat, and cure diseases.

Lili: "Designer babies"...just saying that phase out loud screams commodity to me..."Can I please have a boy with blue eyes and blond hair please!"..."coming right up!" PGD is being taken to a whole new level when it is being used beyond medical reasons to pick physical and personality treats...and it isn't even regulated in the US! PGD was originally used to detect major birth defects in the embryo and I think it should stay that way. I believe we are on dangerous grounds when we think that PGD can be left unregulated and in the hands of physicians and patients. It seems to me that the health care community is somewhat aware of PGD and the possible implications for the future...but when the subject of PGD is presented to the public it is a bit overwhelming. This is one of the biggest reasons why Judy and I decided to explore this topic on the blog in the first place...to bring some sort of awareness and discussion to this subject. As for designer babies with defects, when I read about this subject matter I was very disturbed. Why would someone want to give their baby a disadvantage? I'm not going to define what is normal, because normal is relative...but I think I am justified when I say designing a baby with a defect such as deafness or dwarfism is morally and ethically wrong. It is doing harm to someone that is helpless. That's why I think, to avoid the slippery slope of PGD, we should not allow people to pick physical or personality traits. We shouldn't even be able to pick gender!

Video...don't be alarmed if the people in this video look familiar ;)



References:
1. Michael D. Lemonick. Designer Babies. Available at: http://www.time.com/time/magazine/article/0,9171,989987,00.html
2. CBS The Early Show. "Designer Babies" Ethical? Available at: http://www.cbsnews.com/stories/2009/03/03/earlyshow/health/main4840346.shtml
3. John M. Freeman. Lesbian couple create a child who is deaf like them. Available at: http://jme.bmj.com/cgi/content/full/28/5/283.
4. Walter Olson. Disabled rights: the separatist fringe. Available at: http://overlawyered.com/2006/12/disabled-rights-the-separatist-fringe/
5. BBC News. Couple ‘choose’ to have deaf baby. Available at: http://news.bbc.co.uk/2/hi/health/1916462.stm
6. The Independent. Dominic Lawson: Of course a deaf couple wants a deaf child. Available at: http://www.independent.co.uk/opinion/commentators/dominic-lawson/dominic-lawson-of-course-a-deaf-couple-want-a-deaf-child-794001.html
7. Julian Savulescu. Deaf lesbians, “designer disability,” and the future of medicine. Available at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1124279
8. MSNBC. ‘Designer’ babies with made-to-order defects? Available at: http://www.msnbc.msn.com/id/16299656/
9. Darshak M. Sanghavi. Wanting Babies Like Themselves, Some Parents Choose Genetic Defects. Available at: http://www.geneticsandsociety.org/article.php?id=3362
10. Sarah-Kate Templeton. Deaf demand right to designer deaf children. Available at: http://www.timesonline.co.uk/tol/news/uk/health/article3087367.ece

6 comments:

  1. Shouldn't we be thankful and happy to have a healthy baby? Hair color, eye color, gender... that's like putting together an online order for Nike's shoes or a car. Not to say that this isn't an extraordinary technology, but who are we to design a human being and who are we to say a child should be born deaf? I agree that PGD should be used only for medical purposes. Maybe it's not regulated in the US because the governemnt is not ready to face all the ethical and moral reasonings behind it all.

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  2. You may find my website, www.humansoul.com, interesting on the subject of the slippery slope to designer humans. The section on "d-humans" has a lot of material on the ethical issues and the first steps being taken around the world on the "slippery slope".

    The website features my novel, Requiem of the Human Soul, set in the late 22nd century, when most of the world consists of genetically enhanced d-humans. There's a proposal at the UN to begin an extinction plan for the unenhanced "Primals" that still remain.

    There are also 4 "future articles" from publications over the next hundred years, showing how the ethical challenges of one generation become the norm for the next generation.

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  3. couldnt find a definition of PGD in a quick eye sweep.. but I think it is important to note the parents in this situation were not able to "pick" or "design" anything... they asked for sperm from a friend that had a high likeliehood of carrying a deaf gene and got lucky. Deaf people marry other deaf people and have children all the time. I think the reality is, the vast majority of parents would be AVOIDING a deaf gene - this is a scary thing for the culturally Deaf community (when there is language (ASL), there is culture, that's why there aren't blind people looking to create blind babies - no shared language/culture) Deaf people forsee that deaf genes will eventually be weeded out by majority hearing population who cannot conceive of the idea of deaf people living rich fufilling lives. Anyone who understands ASL can go on youtube and watch jehannemc's channel. She is the deaf teenage daughter of this couple and she is an incredibly articulate girl who must be seen as meeting any definition of "success". She has her own blog, writes articles, poetry, interviews important newsmakers in her community and while she is obviously still maturing in her political understanding - is politically aware and active in campaigning for positive social change. How many "typical" kids accomplish so much? Kudos to these parents.

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  4. I have found a great product cure for this problem or to learn this Marriage Savior System.  My friend recommended me to visit http://tinyurl.com/urmarriagesaved

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  5. A "designer baby" has always existed. It starts when you select a mate, someone that you find has desirable physical and intellectual features; you marry that person, then have a child with him/her. Anyone with half a functioning brain should be able to see this.

    Also, many deaf people do not see deafness as a disability, they see it as a gift. They are happy being deaf. Hearing people who don't understand this are simply bigots.

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  6. There are many times that people want to have a baby of their preferred gender. Some want a baby girl and some want a baby boy. Even they want twins or triplets. There are many process of select baby gender which is really effective.

    ReplyDelete