Anywhere in the world, news about women who become mothers beyond the usual reproductive age stirs controversy. The first question that is commonly raised is about the women’s suitability as mothers. The second is on ethical issues surrounding the use of new reproductive technologies (NRTs).
There are a number of NRTs currently available. However, this article will focus more on pre-implantation genetic diagnosis (PGD) because this is the one that is hotly debated at the moment. It will also discuss in-vitro fertilization (IVF) to some extent since this is a technology that one has to undergo before a woman could actually have PGD. The “pre-implantation” aspect of PGD is a reference to the selection of embryos that have been fertilized outside the uterus using reproductive technology. This is accomplished by biopsying one cell from an 8-cell embryo for DNA screening, to reveal whether the embryo is affected with a particular mutation or not. Those selected for embryo transfer are then returned to the woman’s body in the hope that one will implant and develop into a healthy fetus.
This interview with Kim Surkan hopes to shed light on some of the issues around new reproductive technologies, in particular on in-vitro fertilization (IVF), PGD and genetic selection in general. A gender studies professor, Kim Surkan, used PGD to ensure that her child will not carry the BRCA1 mutation, a genetic predisposition to breast and ovarian cancer that she has.
Preimplantation genetic diagnosis (PGD) is a technique used to identify genetic defects in embryos created through in vitro fertilization (IVF) before transferring them into the uterus. PGD is presently the only option available for avoiding a high risk of having a child affected with a genetic disease. (Source: http://www.emedicine.com/med/topic3520.htm)
In Vitro Fertilization (IVF), a method of assisted reproduction, a man's sperm and the woman's egg are combined in a laboratory dish, where fertilization occurs. The resulting embryo is then transferred to the woman’s uterus (womb) to implant and develop naturally. Usually, 2-4 embryos are placed in the woman’s uterus at one time. Each attempt is called a cycle. (Source: http://www.emedicinehealth.com/in_vitro_fertilization/article_em.htm)
BRCA1 is a breast cancer susceptibility gene that was first identified in 1994. People carrying a mutation (abnormality) in this gene are at an increased risk of breast or ovarian cancer. (Source: http://www.cancerindex.org/geneweb//BRCA1.htm)
Intrauterine insemination (IUI) is a common form of artificial insemination (AI). AI refers to techniques used to introduce sperm into a woman's body through means other than sexual intercourse (Source: http://www.fertilitycommunity.com/fertility/reproductive-assistance-iui.html)
Prophylactic surgery, a surgery to remove an organ or gland that shows no signs of cancer, in an attempt to prevent development of cancer of that organ or gland (Source: http://www.cancer.gov/Templates/db_alpha.aspx?CdrID=45092).
Mavic Cabrera-Balleza (MCB): Kim, please tell us about yourself.
Kim Surkan (KS):I am 38 years old. I teach women and gender studies at the Massachusetts Institute of Technology. I’m in a same sex relationship. Given my background, I’m approaching these questions on reproduction, reproductive technologies and genetics from two standpoints—from a personal standpoint and from that of an academic-feminist. I should also say that the process my partner and I went through so I could get pregnant also affects the way I engage in these issues.
MCB: How and why did you decide to undergo PGD?
KS: When I was 34, I found out that I carry the mutation for BRCA1, the “breast cancer gene”. It is a genetic mutation linked to elevated risk for cancers of the breast and ovaries. BRCA1 is an autosomal dominant gene disorder, so it differs from autosomal recessive conditions like cystic fibrosis or beta thalassemia major wherein you inherit the defective gene from both parents. With BRCA1 there is already an elevated risk even if the mutation is only inherited from one parent. Therefore, a person with the BRCA1 mutation has a 50-50 chance of giving it to the next generation. The oncologists are telling me that I have an 80 percent chance of developing breast cancer and 40 percent chance of developing ovarian cancer in my lifetime. That’s a very high risk.
MCB: What are the other recent developments in reproductive technologies?
KS: IVF has been around for many years but the technology has gotten better and better. There is much more sophisticated understanding hormonally of how the female reproductive system works. This has enabled doctors to manipulate reproductive cycles more precisely using hormones—and this is what is going on in most of these processes. The female reproductive cycles are manipulated to intervene and surgically remove eggs or stimulate ovulation, and then inseminate. Medical people can control these processes and hopefully offer a positive outcome for women with infertility. In some ways it is good because it offers hope and alternative for people who cannot conceive naturally. However, in other ways it’s creating a situation where women’s bodies are being more and more managed.
MCB: What are the key issues that cut across reproductive technologies that women should be aware of?
KS: I would focus on PGD. PGD is broadly controversial but probably even more controversial in the feminist community and in the disability community. For the lesbian, gay bisexual, and transgender (LGBT) community, one that is already vulnerable to discrimination, the question is: what is the implication of these kinds of technologies? If, for example, a gay gene is discovered, should these technologies be used to select for or against homosexuality?. What then is the relationship between genetics and identity? That question is underlying many of the ethical dilemmas that occur around PGD. But then, it’s precisely those people in the LGBT population who need the reproductive technologies to have children with same-sex partners. I find that there is a peculiar kind of balance between what people are willing to support and what they obviously need in order to have biological children.
For many people, PGD raises this spectre of eugenics and that’s really where people’s unease comes from. The question that really stands out is: what will happen if selection becomes easier and easier to do? How does that change the face of who is on the planet? For some people this question translates into simply saying “We should ban this technology because we can see where this is headed. …You’re already eliminating people with Down syndrome or other disabilities or so-called diseases! I don’t view my condition as a disability. It’s part of who I am. I don’t want to be removed from society because of this.”
I’m very sympathetic to disability activism but I think we should put things into perspective. In my view, there is a concrete difference between eliminating people who are already living ( which would be genocide) and selecting for embryos that are not afflicted with a particular disorder. At the same time, there is a real tension between the discourse of disability rights and the discourse of choice in relation to reproductive technology. When we speak of choice, we are asking whether it is reasonable, fair or valid for women to make a decision about the conditions under which they are going to become parents. We’re also talking about the type of support and special needs they might be willing to offer a child who might have cystic fibrosis or Down syndrome. It’s a tricky question.
MCB: Outside of the issues you explained, what advantage does PGD offer to women?
KS: PGD is used in two different ways. One is strictly in an infertility context where it is used to screen the embryo for chromosomal abnormalities that might cause miscarriage or preclude the further development of the embryo. In that scenario, doctors are trying to optimize the best embryo that would have the best chances of completing its term. The other way is to use PGD to find out if a specific embryo is carrying a particular mutation or a specific characteristic. This is where it gets trickier. There are certain conditions in which the fetus will not survive or even if a child is born, the child will not survive beyond the age of 6 months or 2 years. If you have a couple who know they carry a certain mutation that predisposes a number of their embryos to a devastating and possibly fatal disease, PGD can help the couple avoid that kind of situation by indicating which embryos are afflicted and which are not.
PGD has traditionally been used for people carrying a mutation directly resulting in a condition such as cystic fibrosis. In those cases the technology has been really beneficial because it enabled people to have a healthy child without the Russian roulette of trial and error and the consequences of excruciating decisions about ending the life of a baby born with a fatal illness, palliative care and going through pregnancies that are doomed.
MCB: What are the other issues around PGD and other NRTs that women should be aware of?
KS: Women should be aware of the medical risks. In six out of the 12 intrauterine insemination cycles required by insurance to document my infertility, I was on the drug Clomid (Clomiphene citrate), to stimulate the production of extra follicles. Later I was prescribed injectable gonadatrophins. All of these fertility medications drastically increase your estrogen level. For a person with BRCA1 mutation, this may or may not be adding risk for the development of breast and ovarian cancer. This made me very agitated and I wrote petitions to the insurance company asking them “can you not just give me access to fertility treatments that have more efficacy, that are actually going to work rather than making me go through all of these failed cycles in order to demonstrate that I have been trying to conceive for a full year?” Meanwhile, I’m delaying prophylactic surgery, I am boosting estrogen levels and I don’t know the impact of that on my health. It was really nerve wrecking!
With the use of NRTs, you’re codifying parts of reproduction. It’s happening to both women and men but with men it’s much easier because donating sperm is a less invasive process. What female egg donors do not realize is the extent through which they have to be monitored and managed and take medications which have side effects. The woman has to be pumped with hormones to stimulate egg production for a successful retrieval. One risk of injecting fertility medication is the development of a condition called ovarian hyper-stimulation syndrome (OHSS). Women who suffer from severe OHSS can experience respiratory distress and excessive fluid retention. They may require surgery and can even die if not treated.
Another question is: Should we use reproductive technologies to preserve reproduction? For example, a 20-year old woman could go through egg retrieval and store her own eggs. She might say “I am not interested in having a child now at age 20 but I might want one at 35 or 40 and I could avoid this whole problem of trying to become pregnant at an age when my eggs are fewer and older and perhaps defective.” But the problem is that the technology right now doesn’t allow us to freeze eggs. You can only store embryos—eggs that have already been fertilized. This means you are asking a 20-year old woman to select the sperm that will contribute the other half of the DNA of the child. It’s a really tough decision to choose the person that you ultimately want to have children with 15 or 20 years in advance!
Right now, the only cases I know of in which women are actually storing their embryos are cancer patients who need to remove the breast or ovaries prophylactically. In these cases, women need to undergo chemotherapy, which may render them infertile. Therefore, they would rather retrieve eggs and cryogenically freeze embryos ahead of time so that after recovery they could use a frozen embryo to become pregnant.
For most heterosexual women, this sounds crazy because the rhetoric of motherhood and reproduction is that this is a natural process. The idea of using these reproductive technologies is still foreign to most women. It’s not something that they embrace. This is also part of the question of do we need to critique the technology? Yes. Do we need to ban it? I don’t know. It is certainly an invasive procedure for women and I don’t see thousands of women signing up to do this just to bear a child.
MCB: I believe that one other concern about NRTs is the prohibitive cost. How much does one have to spend for PGD and IVF, two processes that you had to undergo?
KS: PGD costs about US$5,000 and IVF anywhere between US$10,000 to $15,000 per cycle, because you have anaesthesia, surgical costs, daily ultrasound monitoring, blood tests, and the drugs themselves which cost thousands of dollars. Some couples with infertility problems take second mortgages on their houses to pay for an IVF cycle in the hope that it will work. You also have people who cannot pursue it anymore after an IVF cycle fails because they can no longer afford it. Even adoption is expensive. Many of the NRTs are simply not accessible to working class and low income people at all.
It’s one thing to budget for a major expense when you’re buying a product or service that you can really count on. But this is a gamble! Even though IVF is the most effective technology available on fertility at this point, the success rate is only about 40 percent. And the older you get, the worse your chances are—again, the question of women’s biological clock! It’s not something you can budget and save for and then do it five years later because by then you have almost a zero chance.
MCB: A possible outcome of the prohibitive cost of NRTs, particularly PGD and IVF is the creation of a genetic class divide. What are your views on this?
KS: This is the biggest immediate problem and the question is: who can afford to choose, to select? The fact that the technologies exist is wonderful but they are not very accessible. I was able to access them because of perseverance and almost stubbornness on my part. First, you have to know that the technologies exist and then you have to be able to access them in terms of getting insurance approval or simply paying. At a fundamental level, the question is who is allowed to have a child at all? Then the further question of what does the child look like and who will the child be? Then the question becomes, who has access to the selection process?
MCB: I understand that you went through great lengths to get insurance approval and that there were greater hurdles for you because of being in a same sex relationship…
KS: The insurance policies are set up in such a way that they will not recognize infertility in women “who have no exposure to sperm” unless you document infertility by going through 12 intra-uterine insemination cycles at your own expense. In many ways this is discriminatory because there is no way to prove as a heterosexual that you are having sex at home consistently and at the right time for a year and yet they require that of lesbians. And this doesn’t affect lesbians alone –it also affects single women who cannot produce a male partner who will stand there and say “I’ve been having sex with this woman.”
From a financial standpoint, of course the insurance companies are much more interested in trying every other avenue before you get into IVF because of the cost. I had to establish with the insurance company that I am infertile. Infertility is still something that is not thoroughly understood. There are some concrete reasons that women could be infertile—–women have blocked fallopian tubes, endometriosis, or the uterine lining is not robust enough to support a pregnancy. In 20 percent of the cases, the reason for infertility is unknown. That is the category I fell into. Because I am in a same sex relationship it was more difficult for us to establish infertility.
It also became a social issue. We went to different clinics and we were using donor sperm—many times it just wasn’t working. And then the doctor tells me,” well, you’re over 30, it just takes longer.” There is also a double standard. If you are in a heterosexual relationship, the reception is a little bit warmer in some ways. You can walk into a clinic and say “we’ve been trying to conceive for a year now and nothing is happening” and the medical practitioner will say “let’s do some tests.” If a lesbian couple comes into a clinic and says “we’re trying to have a child but it’s not working.” They sort of look at you sideways and say “well, not working?” (chuckles). Then you have to explain, “we’re trying this with donor sperm.”
MCB: Did you have to choose a male embryo--in effect selecting the sex of your child because men rarely develop breast cancer?
KS: I didn’t select. In the end, I don’t know anything about my child genetically. Because in my case, the combination of my infertility with the precariousness of this technology did not add up to a successful PGD process. I had to choose between biopsying my few remaining embryos -- possibly damaging them in the process – or just transferring what I had and hoping for fate to give me a break with the 50/50 chance of passing on the mutation. I chose to roll the dice. My son could still have this mutation, and if he does, he has a 50/50 chance of passing it on to his children, if he has any. This is where technology fails. PGD really works best for people without fertility problems, who have many high-quality embryos at the start of the process. Ultimately, a selection process like PGD is still a compromise. It’s not fixing a problem. It’s simply enabling you to avoid it. What would be better would be to repair the mutation or avert it totally. Then you won’t need to be in a situation of selection which could be ethically difficult at some point.
MCB: Just one question on the practical side, how long is the whole process of PGD and IVF for you—from your initial attempts to become pregnant through interuterine insemination to the time you gave birth to your son?
KS: We started in 2004. It was a very intense process. I had intrauterine inseminations every month for a year, followed by three more IUI cycles with gonadatrophin medication, and then two IVF cycles. The last one finally resulted in pregnancy. I felt very pressured throughout the process, because I couldn’t afford to miss a cycle because I was trying to document the attempts for insurance coverage of my infertility. At the same time I was trying to make it work and not miss any opportunities to have a successful pregnancy while still living my life. It’s not something you can schedule like a dentist appointment. This makes it difficult in terms of travelling, careers and conferencing.
MCB: Apart from the women or the couple undergoing PGD and IVF, medical professionals, insurance companies and state governments, who are the actors in this issue?
KS: We should look at for-profit fertility centres. Feminists are rightfully sceptical of the impact they are having on the emerging market economy around reproduction. It’s rare now to be able open a college newspaper at one of the Ivy League schools and not see an ad for sperm or egg donors. This is profoundly disturbing in terms of the marketing of reproduction. We don’t tolerate the purchase of organs for transplant but at the same time it is now becoming increasingly common for people to advertise to pay young women who are Harvard students with specific SAT (scholastic aptitude test taken by U.S. high school students applying to colleges) scores and blue eyes and blond hair or whatever. Agencies place these ads, and there are also private ads placed by infertile couples who are looking for elite young women, many of whom have massive student loan debt. US$ 10,000 or $20,000 is a lot of money so they are willing to go through this procedure.
There are medical institutions that practice responsible medical management and there are some less reputable ones that are mainly for profit. This is where a voice of critique is needed, because it is very easy to misuse these fertility drugs and that could have devastating consequences.
Research scientists are also a group of actors in this debate. When you have large numbers of women having their eggs harvested, you are generating more and more embryos. These embryos are sometimes frozen in large quantities. What will happen to these embryos? We also know the value of embryonic cells in stem cell research but federal funding for the use of these cells for research is banned in the United States. The ethical issue here is: is there a danger of over-stimulating women to produce eggs and embryos so that we can generate more of them for research purposes?
MCB: Is there a growing number of women who decide to become egg donors for financial and other reasons?
KS: I think there is—although I don’t know the exact statistics. But if you only look at the growing number of sperm and egg banks, that is a clear indication. [Fox News.com reported that “In 1996, women in federally monitored programs donated eggs just over 3,800 times. That number has risen steadily, to more than 10,000 in 2004. Source: Women Increasingly Donating Eggs for Cash. February 19, 2007. http://www.foxnews.com/story/0,2933,252745,00.html]
MCB: Have faith-based groups played a role or made their voices heard in this?
KS: It’s colouring some of the advice given about the use of reproductive technologies. For example, some of the hospitals are owned by Catholic groups; some of the research facilities are based in Catholic educational institutions. I think the religious right views genetic selection as a kind of abortion— they are put in the same camp. It’s a very curious thing because there are some feminists and some disability activists who agree with that -- not necessarily to the degree that it is the same as abortion, but they regard genetic selection as unethical. They equate it with eugenics. I went to a feminist conference where there were people talking about PGD in the same breath as the Holocaust, the Tuskegee syphilis experiment and prenatal screening for Down’s syndrome. It’s not helpful to lump all these things together. It’s quite clear that there have been eugenic policies in this country around sterilizing women of colour or encouraging people to get Norplant and even legislating and mandating it. I believe there have even been cases the courts have ordered Norplant for women convicted of child abuse. However, we need to evaluate and discuss reproductive technologies individually, rather than lumping them all together and dismissing them as eugenics or genocide.
I also would like to emphasize that selection is falsely discussed as killing or as genocide when in fact it’s pre-emptive. With PGD, you’re simply choosing which embryos to transfer and which ones to discard. For the religious right in particular, the question becomes “when does life start?” And if you believe that life starts at conception -- or at the moment of fertilization in the case of IVF -- then that’s the only circumstance under which you can argue that selection is genocide. That is tantamount to saying that by discarding embryos you’re killing people. From a feminist and pro-choice standpoint, that’s an extreme perspective. As feminists we’ve always argued that the fetus is not a person. That’s even more true of the embryo because it is a collection of cells at a much earlier stage of development, so we’re also saying that an embryo is not a person. The embryo is not viable outside of the female body.
We need to be careful in evaluating the various types of reproductive technologies and thinking about their implications.
MCB: How are governments involved in this issue?
KS: In the United States, insurance coverage is defined by states. I wouldn’t have my son at all if I had not moved to Massachusetts from Minnesota. Massachusetts is one of only about four states that legislatively require insurance companies to cover IVF for nonmarried persons due to infertility. Several states have some kind of infertility coverage, but not usually IVF and often they require that the woman is married to the sperm donor.
MCB:How do these issues around NRTs intersect with the new information and communication technologies?
KS: The ability of medical science to use NRTs is outstripping most people’s grasp of what it means. I believe the new information and communication technologies can either counter or reinforce what the mainstream media says about PGD. Every time the media covers this subject, the phrase “designer babies” is stamped all over it and that’s how it gets translated into popular discourse. We understand designer jeans and the media explains the concept of designer genes in the same way.
There is also a vast wealth of information about infertility and various protocols to be followed in the treatment of different conditions. I spent a lot of time online researching fertility medication, PGD, IVF, and other aspects of infertility and pregnancy. Social networking with others dealing with infertility through bulletin boards and blogging was also a huge part of my process over the 2-1/2 years I was trying to conceive.
The internet is also widely used to advertise buying and selling of sperm and eggs, and services provided by fertility clinics. “Egg and sperm donors wanted” ads are very common on the internet.
MCB: What message do you want to impart to our readers?
KS: Be as informed as possible. Have a realistic picture of the technologies. If you’re someone who has a particular genetic problem or mutation, it’s important to meet with a genetic counsellor to discuss it and determine if that is something you want to know more about or be tested for. Some people prefer not to know these things but I believe information is empowerment so the more you can find out, the better you are equipped to make good decisions.