Sunday, July 12, 2009

Our Concluding Thoughts


Let’s take a little gander at all the amazing topics we discussed on this 6 week journey: the Katie Trebing story, savior siblings, difference in perception of embryos, 411 on IVF/PGD/bone marrow transplantation, PGD regulatory practices or lack there of in the US and internationally, testing your flag skills, and lastly, slippery slope of PGD-->Designer babies?!? Wow, we have definitely covered a lot of ground in such a short period time. Hopefully, y’all thought it was informative, interesting, thought-provoking, and just a smidge of fun :-) I just wanted to thank you all for following our weekly posts and a double thank you to everyone who left awesome comments on the site! This was a topic that we both new very little about prior to this blog but were extremely intrigued in the emotional, moral, and ethical issues that encompassed it. It definitely won’t the last you’ll hear about these topics. So here’s to the future of savior siblings/PGD/designer babies and the anticipation of what’s to come!

My conclusive thoughts on the topics at hand (this is for those that are too lazy to scroll through the previous posts):
  • The book, My Sister’s Keeper = two-thumbs up, highly recommended read (grab a box of Kleenex though).
  • Savior siblings = Personally, if utilizing IVF/PGD for the creation of a savior sibling is an option for my family in the future, I would seriously consider it. I would like to think that I would only consider blood and bone marrow transfusions. I'm not at 100% peace with this thought but this is where I stand at this point.
  • The perception of an embryo = tough one, see above comment in regards to the 100% peace…I struggle with the thought of discarding so many viable embryos in the process of IVF and PGD solely for the creation for the ‘perfect match.’ However, definitely don’t think banning of these techniques are the answer.
  • PGD regulation = need some form of regulation here in the US!!!
  • Slippery slope of PGD/‘Designer babies’= regulation of PGD, where PGD is utilized to serve the purpose of medicine: to diagnose, treat, and cure diseases.

Yay, I'm free from the blogging world!!!!
Peace out bloggers :-)



Q&A with Gregory S Loeben, Ph.D. - Bioethics Professor at Midwestern University - Glendale, AZ

We asked our bioethics professor some questions pertaining to the Trebing case and the issue of discarded embryos in IVF/PGD. This is what we received.

1) What is an embryo to you, is it a human being? or a collection of cells? Explain.

I assume by embryo you mean the developing entity from conception onward. I point this out because the developmental continuum is long and the entity changes in important ways along that continuum. There are many ways to describe the entity and the appropriateness of those descriptions may change as the entity changes. The term embryo creates a certain picture in most people’s minds, an image that can then influence their beliefs about how it should be treated. This picture is usually not an accurate representation of the early stages in the developmental process so one might be careful about what language they use to refer to the developing entity.

Even in its early stages, the entity is clearly human because it has a human genetic code. But that doesn't tell us very much about it's overall ethical standing. All of my cells are human and yet they are not ethically valuable in the way that I am. Is it a human "being"? That depends on what you mean by adding the notion that it is a "being". I would argue that in the earliest stages the entity is human but is not yet a singular being. The argument for this includes the fact that the entity can actually be split (either on its own or manually) and will develop into more than one entity and can even reform back into one entity, as well as deeper philosophical ideas about what constitutes a "being". However, after a short period of time as it develops the entity clearly becomes a human being. There is no bright line where this happens. Biology works in processes more than sharp delineations. But on my view, relatively early on it becomes a human being. This does not mean that it is equal in ethical standing to all other human beings. We get some value in virtue of the fact that we are human beings, but that is not where all of our ethical value comes from. In the early stages of development, the embryo is human but there are a number of reasons why it's ethical value is considerably less than it will be as it progresses along the developmental continuum. This is important. There are many forms of life that we value less than people. Why? What is it about them that makes them appropriate to kill or eat or use? Is it simply that they are not human? That seems superficial to me. These other life forms can be complex, unique, and some are capable of emotion and awareness, and yet many people think it perfectly acceptable to kill them. Why? My point is that merely saying “life begins at conception” tells me very little. I can agree with that, but still think that the life in question is less valuable than other lives. And simply saying it is a human (because it clearly has human genetics) doesn’t tell me much about why I should value it more than other types of life. The explanations for why humans matter are more complex and don’t all apply (though some do) in the very early stages of our formation.

One other aspect I would mention is that ethical value can exist intrinsically (in the thing itself regardless of others valuing it) or extrinsically (as a result of someone valuing it). Early embryos can have value in themselves (which I would argue starts weak and becomes stronger) but they can also have value because someone (or some group) values them. For example, if this were my embryo and my partner and I valued it greatly in its early stages, that would affect the value of the entity in the world, not just for us, but generally. There is a sense in which the value of things that may not have great intrinsic value can be increased extrinsically by others valuing it. And this value needs to be considered as well, though exactly how to factor it in is difficult to state simply.

2) What are your thoughts on IVF/PGD and the embryos that are discarded during the process?

Such a complex issue. There are so many children in the world without families. In one sense, I find it sad that we can’t move our conceptions of parenting and family in ways that would allow people who want children to find greater satisfaction in adoption of children who already exist. Having said that, I also understand that many people desire to have a child that they have biologically created.

I am comfortable with IVF and PGD. In the very early multicellular stages, I do not think that these entities have substantial intrinsic worth, so I do not find their creation and destruction to be ethically wrong in itself. They can be applied inappropriately in particular instances, but that is a different concern.

There are two things about IVF and PGD that I find interesting. The first is that it is one area where a number of proponents of the view that “life begins at conception and the entity is a human worthy of full consideration” do not seem as uncomfortable with embryos created and discarded as part of assisted reproduction as they do with certain forms of birth control (for example, the morning after pill). Many people are consistent in their beliefs here, but it seems to be one area where inconsistency often appears.

Second, this is an area where you often hear objections based on the claim that it is “unnatural” which is an argument that I think suffers from overuse and a lack of clarity. The boundaries of what is “natural” are notoriously difficult to pin down conceptually. Often, the argument amounts to something like “I don’t like this thing and it’s being done in a way I don’t like.” Saying it is unnatural requires a more careful explanation of what makes something unnatural. On top of that, simply identifying it as unnatural isn’t enough. There are lots of unnatural things that people accept as morally good or required. Saying it is unnatural also requires that you say why this particular unnatural thing is bad when those other unnatural things are good.

3) If you were in the situation of the Trebing family and had the option of IVF/PGD to have a baby that will be able to save your ailing child, would you go through with it?

Yes. I find it disingenuous to argue that the Trebings are having a child for the wrong reason. People have children for all sorts of reasons, and sometimes for no reason at all. The Trebings are creating a child that they will love and who they hope will be able to help their other child. The burdens on that new child will not be unacceptable. The risks to it are not significantly greater than those on most other children brought into the world. In fact, they are far less than most other children in the world. And it is simply absurd to argue that they are only doing it to save their first child. People decide to have kids for a variety of reasons, but in the vast majority of cases the existence of the child and their love for it goes beyond those reasons.

4) Anything else you want to say, thoughts

What do people mean to be arguing when they make the statement that "everything happens for a reason"? In the video of people’s opinions, a young woman offers as a partial justification against the Trebing’s having a second child to save their first that everything happens for a reason. She appears to be implying that the death of the first child (if it occurs) can be seen as part of a larger plan. I fail to see why this is relevant and I find the widespread use of this belief as an argument to be particularly frustrating.

If everything happens for a reason, then anything that happens would happen for a reason, including having the second child to save the first. The belief offers no way to say which one the Trebing’s should do. It is simply a way after something happens to say that we should accept it as part of good system (if it was part of a bad system, why would we be relieved to say that it happened for a reason?). So, either one means this literally, in which case they seem to be saying that they believe all actions and choices and consequences are part of an ethically good larger plan that we don’t know and so we should accept them (if it doesn’t imply that we should accept them, why say it?). Or they are saying something like “I really don’t know what to think about this situation, so I’m just going to believe that this terrible thing (like the death of the Trebing’s child) is happening for a reason so I can feel better about it.” What a convenient belief to hold. With that belief we don’t need to determine good and bad, we can just believe that it’s all good at some level. This drives me a bit crazy. Things happen and reasons exist. That doesn’t mean everything happens for a (good) reason. And saying everything happens for a reason doesn't tell us anything about good and bad.

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).

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?


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?


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 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 ;)

1. Michael D. Lemonick. Designer Babies. Available at:,9171,989987,00.html
2. CBS The Early Show. "Designer Babies" Ethical? Available at:
3. John M. Freeman. Lesbian couple create a child who is deaf like them. Available at:
4. Walter Olson. Disabled rights: the separatist fringe. Available at:
5. BBC News. Couple ‘choose’ to have deaf baby. Available at:
6. The Independent. Dominic Lawson: Of course a deaf couple wants a deaf child. Available at:
7. Julian Savulescu. Deaf lesbians, “designer disability,” and the future of medicine. Available at:
8. MSNBC. ‘Designer’ babies with made-to-order defects? Available at:
9. Darshak M. Sanghavi. Wanting Babies Like Themselves, Some Parents Choose Genetic Defects. Available at:
10. Sarah-Kate Templeton. Deaf demand right to designer deaf children. Available at: