INFERTILITY SURVIVAL GUIDE: Part 1 – Biotech

Tricia_Robertson_Bogle_CU

How do you reconcile medical necessity to use Reproductive Technologies with ethical considerations and still remain a good person?

Dr. Tricia R. Bogle is a Visiting Assistant Professor at Montclair State University, where she teaches advanced seminars in reproductive biotechnology, bioethics, and feminist theory for the Political Science & Law Department, the Honors Program, and Women’s & Gender Studies Program.

I met with Trish (as she likes to be called) at ABA Turkish restaurant on Columbus Circle, the same place where Marni (Dr. Marni Rosner) and I used to meet every Tuesday night in preparation for THE CYCLE: Living A Taboo Forum. The gusts of chilling wind erupted across 57th Street for the first time this fall. The outside section smitten and deserted, I hurried into the brightly lit warmth of the family-style restaurant.

Trish had previously approached me at the Forum. She spoke enthusiastically about my documentary project and about how much her students would benefit from seeing the dilemmas posed by modern reproductive biotechnologies reflected in a simple human story. We exchanged cards and a few weeks later made plans to meet. I waited. The patrons were absorbed in their couscous and braised Mediterranean fish. Across the dining room sat a young woman wondering about her dinner party. I approached her. “Professor Bogle?”,- she startled me with her youth and energy.

As an infertility patient, I had a history of taking caution when matters of bioethics were tossed in the equation of my options. Sometimes discussions of reproductive ethics felt like a personal attack. This conversation was very different. I had a chance to speak with bioethicist from my perspective, having been through the futuristic grind.

1. Is infertility on the rise and why do we have difficulty accepting it?

The studies I’ve read are mixed about whether infertility is on the rise.  Some do seem to indicate that infertility rates are up, particularly in developed countries. Women also tend to have their first children a few years later than in less-developed parts of the world.  As your readers are likely painfully aware, there is a strong correlation between age and declines in fertility, particularly in women.  In the scientific community, there is some debate over how to fully and properly document cases of infertility.  If a decline in fertility is a natural part of the aging process, it can be hard to know whether a woman who wants to become pregnant, but is past a typical childbearing age, should be included in statistics documenting medical infertility.   This quickly becomes a hot-button issue for all kinds of reasons.

As for why individuals on a personal level have trouble accepting infertility when faced with it themselves…well, that seems very understandable to me. 

Reproduction is a deeply human and emotional endeavor—as a philosopher, I’d call it an existential endeavor. By that I mean that reproducing is a way (not the only way, but one of the big ways!) that humans can give their existence meaning and purpose, and create a tangible, physical link to future generations.  Reproduction is, at its core, a way to thumb our noses at death and to achieve a small piece of immortality. 

It makes sense that infertility (the loss of a genetic link to the future and the loss of a source of self-definition) would trigger a deep and painful existential crisis in an individual–akin to the level of crisis triggered by a death. Infertility is not something that is accepted easily, and new biotechnologies can, paradoxically, make infertility even harder to accept.  That is because when faced with an existential threat, the natural human reaction is to fight—and biotech appears to offer tools and hope for that battle.  But when biotech fails to help—as it so often does—an individual must then face both the original pain of infertility (which hasn’t gone away) and the new, additional traumas caused by the failed treatments themselves.

2. The drive to create one’s own biological offspring is very strong.  It makes perfect sense that women and men will go to great lengths, including the use of a variety of assisted reproductive technologies (ARTs), to have children who are connected to them genetically or biologically.  So, why are the emotions of fertility treatment patients not validated in the same way as potential adoptive parents’ feelings are during the process of becoming a parent?  For example, adoption agencies present the concept of creating attachment to the idea of parenting from the moment a potential parent chooses to undertake the adoption journey, whereas fertility clinics don’t acknowledge this in the same way.

This is a very good question.  I think that there are a couple of reasons for this phenomenon.

Within the medical community, doctors tend to focus on the technical aspects of treatments, and be fascinated by the science.  The field of reproductive biotech is exciting and interesting to many medical students because it is cutting edge.  Medical professionals and scientists often to go into this field because it’s intellectually engaging, and breakthroughs are possible every day–rather than because they [the doctors and scientists] are deeply interested in the emotional lives of patients.  In fields that are cutting edge, patients also double as research subjects for experimental treatments. (This is true in cancer research as well.) 

Medical schools—as part of training—teach the importance of maintaining a critical and emotional distance from patients and research subjects.  What that can mean for fertility patients is that their emotional needs aren’t validated or met in the clinical setting— the doctor is just focused on the technical aspects of the treatment, rather than the deeply emotional and human meaning of reproduction for the patient. 

I’ve heard a fertility doctor say, “I treat patient’s medical needs, not their emotional ones.  If they have emotional needs, they can go to a therapist.”

I’m not saying I approve of this (it’s actually a rather galling attitude) but it may help explain what some infertility patients experience as a lack of emotional support in a clinical setting.  Doctors simply don’t view tending to a patient’s emotional needs as their primary role in the treatment process.

With adoption, in contrast, a client is more likely to be interacting with agencies and social workers whose mission is not—and never was—scientific or technological.  There is an understanding from the outset that the goal is not to solve a medical problem, or treat a disease, but to unite a parent with a child.  The training for adoption professionals is different, and the type of person drawn to the profession is different.  So it doesn’t surprise me that there would be a different level of nurturing and respect for the emotions of everyone involved when a client steps into an adoption agency versus stepping into a fertility clinic.

It would be great if there were more training for doctors in how to deal sensitively with the emotional—not just medical—needs of their patients, and if fertility clinics were more nurturing places.  That’s a change I’d love to see.

3. Yes, the moment we enter into fertility treatments of any kind, we connect with the idea of becoming a parent and birthing a new life into the world. Something begins to shift internally to make room for this amazing undertaking. In case of natural conception, the bond between parent and child-to-be starts to form the moment of that first positive pregnancy test.  But when a patient has to use ARTs to become pregnant, there is a delay (or no result at all) between the act of will – going for the treatment, and the physical manifestation of success. This gap is reinforced by recurring negative results. The compounded effect of repeated failures, coupled with the lack of acknowledgement from reproductive clinics, is what generates the enormous wave of sorrow.

People suffering from infertility are constantly advised to “just adopt,” implying that adoption is a safer, morally superior path to parenthood than using ARTs. Can you talk about the ethics of utilizing reproductive biotechnology versus adopting?

One of the most painful things someone who is suffering from infertility can hear is “Why don’t you just adopt?”  In my classes, as I teach about the difficulties of ARTs, and outline all the struggles and medical risks fertility patients face, my students often voice this question, too.  I am used to hearing some version of the argument: “There are so many needy children in the world; it’s selfish and wrong to go through all sorts of ART instead of giving a child in need a home.”

This question offers a good opportunity to talk about some basic ethical principles.  From an ethical perspective, one can argue that it is not equitable or “just” to demand that the burden of caring for the world’s needy children fall solely or disproportionately on the infertile.  Even if we concede that there is indeed an obligation to care for the world’s needy children, then such an obligation is one that all should share equally.  And if indeed it is a morally superior choice to provide a home for an existing needy child rather than to create new offspring of one’s own, then both the fertile and the infertile would have an equal obligation to pursue this path.  In other words, to be equitable, every fertile person would also have to be called upon to justify his/her (presumably selfish) decision to produce a new child naturally rather than to adopt.  Since we do not call upon the fertile to justify their decisions to reproduce rather than adopt, we should not call upon the infertile to do this either.  We should not demand a greater moral obligation from the infertile than the fertile.  Using this reasoning, it is possible to say to the infertile, “As a bioethicist, I absolve you from any greater moral obligation you may feel—or that others may want to impose upon you—to pursue adoption rather than ART as a way to become a parent.”

4. This is very refreshing and important to hear.  People undergoing fertility treatment grapple with the grief caused by infertility, the moral implications of their choices, and the lack of a support system that exists say, for cancer patients.  At the same time, people experiencing infertility are frequently pressed by others to defend their right to create a new life using ARTs–and this can add to their pain.  We’re entering an age when the use of ART is becoming standard.  Although still a taboo in a social discussion, every gathering I’ve been to has people holding dear the secret of failed treatments or the nature of their child’s creation.

We’re still in the infant stages of ART and it’s major practical implications are only looming on the horizon. Blessed be the times when cloning is not on the menu of fertility clinics!

Ah, cloning!  Yes, the specter of cloning is often raised when discussions of ARTs get going.  Cloning is actually a fairly well-understood process, and a number of mammals have been successfully cloned (sheep, dogs, cats, deer, etc.).  Many of the procedures used in cloning (forced hyper-ovulation followed by extraction of eggs, manipulation of germline cells, transfer of embryos, etc.) are procedures that are regularly used in human fertility clinics now.  It wouldn’t be substantively different or harder to clone a human being than to clone any other mammal.  So the question becomes: Will there be a time when cloning is just another reproductive option for people struggling with infertility?

Cloning could actually be appealing as an infertility treatment in certain cases.  One of the classic hypotheticals given in bioethics courses is this: Suppose you have a young, healthy, heterosexual married couple.  The wife’s ovaries do not produce eggs because of a childhood accident which damaged them, but her uterus is fine.  Using a donor egg from which the nucleus has been extracted, the couple creates an embryo using the husband’s DNA (from a somatic cell provided by the husband).  This embryo would be a genetic clone of the husband.  The wife can gestate this embryo to term and give birth to a child who shares exactly the same genetics as the husband.  

The couple finds this preferable because they do not want a “stranger’s” DNA (as you would have in a traditional egg donation situation) in their offspring.  In this scenario, only the husband’s DNA is passed on to the child, and the wife is able to experience pregnancy and birth.

The challenge here is to say why, exactly, would this be “wrong” to do?  Why is this more “wrong” than any of the other items currently on the ART menu at fertility clinics?

Cloning could also be useful for fertile single women who want to reproduce but who do not want to use donor sperm and deal with all the uncertainties donor sperm involves.  A fertile single woman could use her own eggs and her own somatic cells to create cloned embryos that she could then gestate herself.  The resulting children would be identical on a genetic level to her, because they would have only her DNA.

Finally, cloning could also give lesbian couples a viable way to co-create a child, with one partner gestating an embryo created using genetic material from the other.  One woman would be the child’s “gestational” mother, the other the “genetic” mother.  No men needed.

My students who enjoy utopian speculation have a good deal of fun imagining various all-female societies made possible by cloning.  Sisters—truly—doing it for themselves.

5. Why do students choose to study biotech? What type of personalities do you encounter in your classroom?

The classes I teach for the Women’s & Gender Studies Program at Montclair State University focus on reproductive bioethics and public policy surrounding human reproduction in the U.S. and globally.  I get a wide variety of students from different majors—philosophy, law, justice studies, sociology, international relations, etc.  One thing the students drawn to my classes all tend to have in common is that they are very interested in the ways reproductive biotechnologies can empower women.   But on the flip side, they are attentive to the ways the very same technologies can be misused to exploit or disempower women.

I’m struck by how passionate my students feel about matters of fairness and justice, and how quickly they home in on the utopian and dystopian potential of the reproductive technologies currently available.   Sometimes, they seem to be writing the sci-fi movie scripts right in class! Third-party reproduction and the ability to do genetic testing of embryos make at least some control over the genetics of one’s offspring possible now.  This is a very powerful idea, and much of the regulation in the U.S. hasn’t caught up with the technology.

Ethically speaking, one can make a case based on notions of individual autonomy that all individuals should have the right to use their own bodies however they see fit—and that would include selling eggs, blood, sperm, plasma, wombs, liver lobes, kidneys, etc.  There is also a case to be made on the other side that it is unethical for wealthy individuals to use their economic advantage coercively in contracts with the poor, particularly in matters regarding the body.  In my classes, I present multiple ethical frameworks for evaluating issues raised by reproductive biotechnology, because I think it’s important to acknowledge that reproductive technologies and treatments–especially those involving third parties–are not without controversy.  I hope that after taking my courses, my students have both a greater understanding of what technology can (and can’t) do, and also a deeper sense of compassion for the people whose lives it touches.

Tricia, thank you so much for your time! When I first went to India for surrogacy, I looked for ways to reconcile the need to use a surrogate and the guilt I felt was placed on me for going the surrogacy route. I watched “Google Baby” and “Made in India” and didn’t feel the patient’s portion of the story was addressed.

I visited Barbara Collura of Resolve (CEO of The National Infertility Association) looking for a solution, but didn’t find the answer I was looking for.  As a filmmaker I strive to grasp the divide between the society’s perception and the patient’s. It is the bioethicist who grapples with these questions.

While US surrogates are praised on the pages of Huffington Post, 3rd world surrogacy is unanimously viewed as exploitative. If we determine fairness based on the compensation level, then we’re just settling up the fair market price . There’s much exciting areas of discussion in bioethics as applied to practice. But we fearlessly pose the questions and look for ways to progress and learn. Thank you so much for this fascinating and thought provoking content!

INFERTILITY SURVIVAL GUIDE is created as online counterpart to THE CYCLE: Living A Taboo Forum, where scholars, artists, medical professionals, psychologists and experts come to discuss the complex world of Infertility and Reproductive Technologies.

Thank you for visiting and reading this article. Your feedback is very valuable and will make my day. Please share your thoughts. What made sense? How did you like this post?

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