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October 2, 2008 • Part Two of my interview with Damian Adams. See Part One here.
Have you been involved with any campaigns to fight for the rights of DC people?
DA: I have been constantly writing to state and federal politicians. I have been in contact with the state regulatory authority. I have met with the federal attorney general. I have had articles published in the media highlighting the cause and also appeared on a few television shows. I have presented a talk at the national DCSG conference and talked at a seminar attended by clinicians and persons involved in the fertility industry in South Australia.
What do you hope for from a meeting with your donor? What would be your best-case scenario? The worst?
DA: Anything, everything, and nothing. That probably doesn’t make much sense, but I would be willing to accept anything, just so long as I know the truth about who I am and my heritage.
Best-case scenario would be a relationship of sorts—not necessarily a father-type relationship. (I am a realist.) A medical history should be mandatory.
Worst-case: What I am currently in. I am in limbo with no way forward.
What do you think of open-donor programs (i.e., where the donor is identified to the offspring when they come of age)? Do you think they are a workable compromise? Is it simply enough for a person to have the chance to meet and know their biological parent?
DA: This is where a lot of people have trouble understanding my argument. I am not saying that non-biological parents can’t make good parents. There are good and bad biologicals and non-biologicals. The thing is people need to take off their “glasses” and look through a child’s eyes and not through those of an adult.
Being raised by both biologicals is preferable, because it is who we are, our flesh and blood. We see ourselves in our parents and them in us. It is the continuance of kinship and heritage. This is the best-case scenario and to deliberately do otherwise is to deprive the child.
There is no way to ensure that those conceived in DC families will ever know of their origins. (A recent study in Australia showed only 33 percent intended to tell—even less do.) So immediately there is a problem with the majority of families deceiving their child. Deception is not a foundation to build a family on—truth is.
Then there is the issue of kinship separation, loss of identity, heritage—these cannot necessarily be fully retrieved in an open-donor situation as the constant contact and interaction is not there. It is well known in adoption circles that these things are harmful to a child yet we are unable to acknowledge them in the DC community. It is a double standard.
What misconceptions do people have about donor-conceived people?
DA: Some people have argued against views such as mine saying that [such views] are from children raised in a dysfunctional family. However, I was raised in a very loving home, and I love my social father and respect him very much.
They then also try and dismiss my views as being from a disgruntled and ungrateful minority, yet they fail to understand that at one point in my life, I was very grateful and even proud of being DC. But after the epiphany I experienced [when] my daughter was born and realizing that we cannot arbitrarily choose which genetic connection is to be important to children, I had to completely reverse my stance.
October 2, 2008 •
Damian Adams was conceived through donor insemination in 1973 at the Queen Elizabeth Hospital in Adelaide, South Australia. He has been searching for his biological father for over five years, and keeps a blog, Donated Generation, on donor conception ethics and practices.
An advocate for the rights of DC offspring, he has worked with the Donor Conception Support Group of Australia and TangledWebs. He has made numerous media appearances to discuss the unique challenges faced by other “half-adopted” people. You can learn more about his search here.
In this interview, we discuss his search for his biological father, children’s rights, and the donor anonymity debate.
For more on donor-conceived offspring, see my latest article in The New Atlantis.
[Interview edited, condensed, and hyperlinked by Cheryl Miller. Part Two to follow.]
When did you start your blog? Do your friends and family know about the blog? How have people reacted?
DA: I started the blog in July 2006. My wife knows about it as do some of my DC community friends on the Web. No one else does. To be honest, I haven’t had much reaction about it apart from my DC friends who appreciate and agree with what I have written.
When and how did you find out that you are donor-conceived?
DA: From the very beginning. I would have been about three or so.
I imagine if I had found out later in life that I would have taken it very badly and harbored bad feelings towards my parents for deceiving me. Many people use the argument of early disclosure to say that if it occurs then the person would be happy with being DC. I guess I am evidence to the contrary.
You say on your blog that it wasn’t until you were 28 and had children of your own that you began to question your origins. What changed for you?
DA: While I started off searching for non-identifying information (as I at one time agreed with anonymity), I have now changed my perspective, and I wish to know who this person is. This view changed after the birth of my daughter. It was a moment not too dissimilar to the moment that parents often report experiencing when they hold their child for the first time and stare into their baby’s eyes. It was an acceptance and knowledge of a biological connection. That no matter what might happen in the world, we would always be father and daughter. No one or no thing would ever be able to change this.
This biological connection made me think about how I would feel if my daughter grew up not knowing who I was. I need to complete the picture of who I am not only for myself but also for my children. My search is just as much for them as it is for me. The implications of being donor-conceived do not end with me but continue on into the following generations.
How long have you been searching for your donor?
DA: The initial search for non-identifying information started when I was 16. My family is aware of my search and is fully supportive. My mother even assisted in the early stages, and obtained her treatment records for me. Searches for identifying information started in earnest when my daughter was born.
What have you done in searching for your father/siblings? Are you on any donor/sibling registries?
DA: I have been in contact with the hospital and the clinic that obtained the records when the hospital stopped conducting fertility treatment. I have also spoken to the clinicians involved at the time. Through some strange coincidence, my wife’s obstetrician, who delivered our children, was one of the registrars who conducted the procedure (although I was not aware of this when he first became her obs). These clinicians have tried to help in locating records. I have searched through university records of medical students. I have appeared in print, televised, and spoken (radio) media.
I have also joined/registered on a couple of online registries. While there has been a South Aussie donor who has since listed on one of those registries, he is not from my era. There are no other South Australian offspring on them as yet. I decided to finally put my name on them to cross all the boxes and leave no stoned unturned.
I believe that I know who my father is. However, he has denied it. This has been extremely traumatic, and I cannot obtain closure. I cannot get a definitive answer either way.
Have you met any potential half-siblings? If you haven’t, would you want to meet any?
DA: I have not met any potential half siblings. But I would like to. To me the issue of half-siblings, whether through other donations or from a normalized relationship with my father, is of equal importance as finding my father.
August 25, 2008 • After a long hiatus, Conceptions is finally back with another interview. This month’s subject is Robert Terenzio, a reproductive law attorney in Orlando, Florida. Robert’s practice, Reproductive Alternatives, specializes in surrogacy arrangements and egg donation. He also helps Sharon LaMothe (a former Conceptions interview subject) run Infertility Answers, an educational clearinghouse for fertility issues. He graduated in 1991 from Quinnipiac College School of Law in Connecticut.
In this interview, we discuss how reproductive law has evolved, statutory differences among states, and why it’s so important to have an attorney.
[Interview edited and condensed by Cheryl Miller.]
How did you become interested in reproductive law? Are there many attorneys working in this field?
RT: Generically, most attorneys get involved because they’ve had some contact with it. A lot of us were adoption lawyers, who may or may not have dealt with infertility issues. I’ve never had an infertility issue, but some years ago I was helping a group of clients put together an infertility company and as I grew to understand more aspects of infertility, I started dismissing more parts of my practice. Now, I just focus on infertility.
In the state of Florida, there’s only about eight of us. Most of them came out of the adoption area, and added this on their practice. Nationally, I seem to run into the same people over and over again.
I’m a science geek. It’s interesting being involved in an area where the technology seemingly changes day to day, and by changing, it affects the way that we as attorneys have to look at how this technology is affecting people.
Is there a typical day in your practice? If so, what is it like?
RT: Thankfully, no there’s not. Part of the day could be wrapping up a blog entry for my website—I’m looking at something coming out of the news and trying to extrapolate and challenge people to think about the future. Part of it is educational—looking at Infertility Answers and seeing what information could be added to the website. The biggest bloc of time is talking to clients and filling in the gaps with what they might have heard from their agencies and their doctors.
The joke is that we all, in our own ways, become psychologists, in trying to create a reasonably stable, predictable framework for people who have lost control of something that most of the population takes for granted.
How do you find clients? What is your client base like, and has it changed over the years?
RT: The majority of my clients are referred either by agencies that I’ve worked with in the past or reproductive endocrinologists. I have a wide range of clients. I’m getting more and more people for the U.K. and the European Union, who are fed up with either waiting or with the rather conservative laws. Instead of waiting for three, five, or seven years, they can come to the U.S. and get a process up and running within months.
I’ve seen an increase over time in singles, be they male or female. For every five single males I’m working with, there might be one single female.
Why is it important to have an attorney?
RT: I think it’s foolhardy to move forward with something important as a child and not feel assured that everyone has been represented by an impartial attorney. Conflicts of interest are not taken well by the courts.
We’ve learned over time and experience, both positive and negative, how to create a larger and larger safety net for intended parents and gestational carriers. The more progressive states have figured this out already and created statutes.
How are laws among states different? Are there advantages to contracting for a surrogate or egg donor in a particular state?
RT: When you have a statutory framework, it removes a lot of the unpredictability in the process that might exist in other states. In Florida, surrogacies and egg donations are based on the intention of the parties—everyone intends for a result to occur. The court can then rely on that intention to give you what you want, for example, a birth certificate with your name on it.
In a non-statutory state—even one where you have a very pro-gestational surrogacy environment like California—you’re dealing more with the best interest of the child as the basis for how the courts are going to look at the relationship between the carrier and the parents. When you’re an intended parent and you’ve spent thousands of dollars, you want as much predictability as possible.
If you don’t like what’s going on where you’re at, you vote with your feet. Here in the state of Florida, we can easily assure our clients that they’re going to walk away with a birth certificate. But if we take a ride into Georgia, where they go with the best interest of the child standard, that child is not guaranteed to end up in your home.
How do you handle tensions betweens intended parents and surrogates/donors?
RT: There’s always tension. I like to say to clients that the relationship over the year is going to wax and wane. Some days everyone is going to be nice to each other, and some days you aren’t even going to want to pick up the phone when you know it’s the other person. No one really worries about that unless it becomes adversarial. If it becomes adversarial, the team approach kicks in: the agency, the doctor’s office, and the attorneys have a role.
What should people look for in a reproductive attorney?
RT: You want to be confident that the person has done this before. I get a lot of, “My uncle did adoptions 20 years ago...” or “My neighbor is a family attorney...” Being down in the trenches—talking to the judges who themselves are learning this stuff, resolving problems that arise in the course of a pregnancy, and going to the conferences—those sorts of things give you the ability as an attorney to do two things. First, it gives you the ability to write up a generic contract. But more importantly, it gives you the ability to anticipate the problems that may arise—either in your state because of the way your laws are set up or between the parties because of divergent personalities.
What’s the best part of being a reproductive attorney?
RT: I think the hallmark of this area of the law—which I’ve not seen anywhere else and just reinvigorates me—you’re able to provide an avenue of hope to people who not too long ago had no hope whatsoever. Unlike most areas of law, this always seems to be a regular win-win situation for everyone. The gestational carriers are doing something they absolutely want to do. The intended parents are walking away with the one thing they couldn’t have but for the interaction of all the other professionals.
The best part of my week is when a client calls and says, “Hey, we’re pregnant. Our due date is such-and-such...” You can hear the gratitude and, more importantly, can actually participate in someone’s joy.
July 1, 2008 •
Part Two of my interview with Dr. John D. Gordon. For Part One, click here.
When patients ask you for advice on the web, how do you typically respond?
JDG: If they don’t tell me how old they are, I ask how old they are. I’ll ask if there’s a sperm issue sometimes. Usually they lay out in their little shorthand exactly what they’ve been through. I’ll get these six-paragraph descriptions of everything they’re doing.
It’s hard. There’s this old joke: What’s the difference between God and a reproductive endocrinologist? The answer is: At least God knows he’s not a reproductive endocrinologist.
There is a feeling that there’s nothing you can’t accomplish with modern science, and there are certainly some physicians who play into that. That’s not always true. Sometimes things defy explanation; we don’t understand why things haven’t worked. The patient has been through an awful lot, spent $100,000, and has nothing to show.
At that point, it’s incumbent upon somebody to say, “This is about being a parent. Your goal is to become a parent. Obviously, your goal was to be genetically the parent, biologically the parent. But maybe that won’t happen. Therefore you might have to consider what does it mean to be biologically the parent, but genetically not the parent with donor egg or donor sperm? Or to be neither genetically nor biologically the parent and to pursue adoption? Or not to have a family and have a different life?”
Those are important things to present to couples. We’ve all seen patients who ended up broke, divorced, and unhappy at the end of this road. That’s not what we want to see. It’s a terrible outcome.
How did you choose fertility as your specialty?
JDG: My father and my brother are general surgeons, and general surgeons have a different view of the world. The old adage: “A chance to cut is a chance to cure.” Why would you want to be anything else except a surgeon?
I thought I wouldn’t go to medical school because I didn’t see myself as a surgeon. Then I came to the conclusion that I really like science and helping people so maybe medicine would be a good career.
I went to medical school, and thought maybe I’d be a pediatrician. I went on my first rotation and it was a disaster. I didn’t get along well with the residents, and I found it too traumatizing to deal with the sick children—it just broke my heart.
Then I did a rotation in Internal Medicine at the VA Hospital in Durham. That was really sad because all these guys were coming in with multiple medical problems and they’re constantly being admitted. They didn’t get better that quickly. It was depressing.
I went right from there to OB/GYN. I didn’t really know anything about women’s health, except that my father said the OB/GYN guys never slept because they were up all night delivering babies. I did the rotation; I loved it. There was medicine; there was surgery. The women were generally compliant patients. They listen to what the doctor has to say and don’t ignore medical advice--not like men. Men are terrible patients. And delivering babies is really exciting.
Then I did an elective in reproductive endocrinology. It was emotionally charged, but it was very goal-directed. You knew if you accomplished the goal or not, which I liked.
What’s it like being a man in a “women’s field”?
JDG: In the mid-Atlantic and the South, there are some women who prefer to have a male physician. Rarely do you find this in California. The default mode is “I want to go to a female physician because she understands me better.” I can’t argue with that: I can’t say what labor feels like; I can’t say what it’s like to have a bad period or an ovarian cyst.
At times, it would go in the other direction where male physicians were almost demonized: “Why are you in this profession? You shouldn’t be here.” There was a paucity of men in the program, and nationwide that’s continued where there are very few men going into obstetrics and gynecology.
You were immediately suspect. I remember one night being on obstetrics call at Kaiser. A woman was in labor, and I went in and introduced myself. She said, “I want a woman.” I told her, “It’s August. The only woman I have has been an intern for three weeks and she’s only done a handful of deliveries.” She said, “That’s who I want.” I’ve delivered like a thousand babies at this point. Fortunately, things went fine.
The good thing is in a subspecialty, you have patients who say, “I want the best doctor. I don’t care--male or female.” You’re somewhat protected in a subspecialty.
My wife had a female obstetrician for her first pregnancy and said she would never have one again. She felt all her symptoms were ignored or dismissed; she felt no one really was listening to her. It’s true a woman has experience of these things, but if a woman says, “This hurts,” I’m not going to say, “No, it doesn’t.” If she says “Every time you do a pap smear my cervix hurts,” I’m not going to say that’s impossible, because I don’t have a cervix. If you tell me it hurts, I’ll believe you.
What should patients look for in a physician?
JDG: There are a couple of things. The first thing is: What is the experience of the physician? Where did they train? Are they board-certified? What has been their reputation, and what are people’s experience with them and their practice?
The second thing is with IVF, it’s very important to have a good IVF lab. If you don’t have a good IVF lab, you could be the best, most caring physician in the universe and you’re not going to get people pregnant the way you should. That’s something the patients never see. They have to evaluate it based on statistics. The problem is there’s that old adage: There’s lies, there’s damned lies, and there’s statistics.
The problem with comparing practices based on statistics is that there’s a patient selection phenomenon going on as well. What I’ve always told patients is if you’re looking to compare two practices, look at their donor egg pregnancy rates because they should be a level playing field. Everyone has young donors, and everyone has older women who need donor eggs. Their donor egg pregnancy rates should be a yardstick by which you can compare practices--apples to apples and oranges to oranges.
July 1, 2008 •
Dr. John D. Gordon is a reproductive endocrinologist and co-director at Dominion Fertility and Endocrinology in Arlington, VA. He’s practiced for over ten years, and trained at Stanford University and University of California, San Francisco.
Last year, he and his business partner, Dr. Michael DiMattina, published a guide for patients: 100 Questions & Answers About Infertility. To promote the book, Dr. Gordon launched a blog by the same name, and it’s still going strong after over 80 questions and answers. You can also find Dr. Gordon online at the International Council on Infertility Information Dissemination.
In his interview with Conceptions, we discuss how the Internet has changed his practice, how he handles problem patients, and what it’s like being a man in a woman’s field.
[Interview edited and condensed by Cheryl Miller. Part two to follow.]
How did you start blogging?
JDG: It was sort of a natural extension. For the last nine years, I’ve been answering questions on this other website called “INCIID” [pronounced "inside"]. They have different forums that are moderated by physicians. Basically, I post every day or two on questions that come up.
I served essentially as the Internet doctor for these couples. That has its own set of problems because you only get less than half the story usually. You get a modified version of what the patient understands their history to be so you have to be a little bit careful to avoid being dogmatic.
When my father-in-law was diagnosed with lung cancer several years ago, I went to a conference about lung cancer, and there was a book called 100 Questions & Answers About Lung Cancer. I thought it was a great book. I called up the publisher and said, “I see you have fifty titles but none of them are about infertility. Would you like us [he and Dr. DiMattina] to write a book about infertility?”
I thought, “Gee I’ve been answering questions several times a day for all these years.” So you start to see a pattern in the questions you get asked. Out of that grew the idea to have a blog to promote the book.
The other thing is I trained in California at Stanford and UCSF. It’s a different world out in California. Essentially, a male physician has to be twice as caring and communicative to get half the patients and respect of a female physician. My mode of practice has always been full disclosure, a lot of information to the patients, and getting them to be a partner in their healthcare decision-making. The blog is an extension of that.
How has the Internet changed your practice? Do patients seem more knowledgeable or maybe just think they’re more knowledgeable?
JDG: It’s a double-edged sword. I’ve never been threatened by patients asking questions. Patients have always come in--in the 12 years I’ve been in practice--with an article or two. The number of patients who do that has certainly increased with Internet.
The problem is that you do have self-proclaimed experts out there--usually other patients who have had their own experiences--and that can get patients completely turned around. Just this week, I had a patient who was almost having an anxiety attack because of some things she was told on the Internet by another patient. I told her, “You are an individual. You have a unique history to you. You can’t listen to what this other person is saying. We worked on a plan that takes in account your particular needs. Ignore her.”
The Internet also gives patients a bully pulpit. You do occasionally get a dissatisfied patient who can get out there and really throw rocks at you. But you can’t do anything about it. Because of doctor-patient confidentiality, you can’t say, “No, no, you got this backwards. Here’s why we told you that.” We can’t respond to it.
This happened just a couple of years ago. A patient on “INCIID” had posted a question saying, “My doctor wants to do a laparoscopy because he thinks my lining isn’t normal.” I thought, “That doesn’t make much sense. A laparoscopy isn’t going to see the lining because you’re on the outside of the uterus so you wouldn’t have any idea what was going on.” I replied to her, and then the phone rang. The receptionist said that a patient of Dr. DiMattina is on the line for you. I told her he would be back in a minute, and she said, “No, she wants to talk to you. She’s the one who has been posting questions to you.”
I pulled the chart and picked up the phone. I explained, “Your HSG test showed that your tubes are blocked. That’s why you need the laparoscopy.” She said, “Oh, yes, I remember. I don’t know why I got so confused.” So here’s a patient in our own practice who was told this is the procedure we’re doing and this is why we’re doing it, and then she gets completely turned around and relies on this disembodied Internet doctor for advice.
When people give advice without full information, you can really get into trouble. That’s why a lot of my posts end with, “Discuss this with your RE.” Patients are funny; they’ll put amazing stock in what this disembodied voice on the Internet has to say about their care when they’ve been under the care of a well-trained physician for years.
Do you think they’re “checking-up” on their doctors? Perhaps just looking for a second opinion?
JDG: There’s some of that. When people have bad outcomes, they’re trolling around looking for an explanation as to why things didn’t go well. We’ve all had patients like this. I usually say, “It’s obviously disappointing that things didn’t go well. Here are some thoughts I have as to how you should address this with the physician. Ask him about this.”
If their doctor stonewalls them and they want to have that discussion, maybe that’s not the right match. All physicians have different approaches. Some patients have left me because they don’t want to talk about [their treatment plans].
Do you read any infertility blogs?
JDG: On the patient side, I’ve read some of the infertility journey type of blogs. But I live it every day. I have enough of an emotional sine wave riding it with my own patients rather than signing on to someone else’s. It’s hard to read sometimes.
How do you decide what questions to post?
JDG: Every post has been one question from the book. I’ve got a hundred questions--actually 99 since the last one is “Where can I go for more information?” I’ve worked my way up to 80 so I only have 19 left to do in the year or so I’ve been blogging. My goal was to work through every question in the book. I will keep blogging on subjects of a more temporal importance.
I wish I could blog more frequently. You’ve got a full patient load; it’s hard to carve out the time. I have a wife, four kids, and two dogs. The days are full.
June 1, 2008 •
This month’s Conceptions interview subject is Aussie Jodi Panayotov, author of a new infertility memoir, In Vitro Fertility Goddess. (For the first interview, click here.) At age 37, Jodi was dismayed to find that her fertility had “packed up and left home without a forwarding address.” Never one to give up easily, she and her husband, Michel, enlisted a “medical Coalition of the Willing” to help them have a baby. After a two-and-a-half year journey, they had a daughter, Nina, now five years old.
Jodi has been called “Australia’s answer to Bridget Jones,” and her book is an irreverent, edgier take on the new Repro-Lit genre. In the interview, we discuss why IVF is “the new black,” whether women really can “have it all,” and how to talk to your friends and family about infertility.
Jodi also blogs up a storm at her website—take a look! The book is on sale here.
[Interview edited, condensed, and hyperlinked by Cheryl Miller. Part two to follow.]
There has been an explosion of infertility memoirs recently: Peggy Orenstein’s Waiting for Daisy, Beth Kohl’s Embryo Culture, Tertia Albertyn’s So Close, etc. One critic has even given the genre a name: Repro-Lit. Why do you think accounts for the sudden interest in infertility?
JP: Years ago there was almost nothing written about it that wasn’t so dry you needed several jugs of water handy while you read it.
I think the surge is a result of a couple of things—firstly, a pent-up demand from women who have felt terribly isolated in their experience of infertility. As I say in my book, women will so readily talk, ad nauseam, about their reproductive successes but not their reproductive failures.
And of course as more women are postponing childbearing for various reasons, every day there are more of us in stirrups being prodded at the specialist’s office going, “What happened? How the hell did I end up here?” Hence there is more demand for books on this topic.
What is an “in vitro fertility goddess?”
JP: A fertility goddess is the woman who reproduces readily and with ease. I used to find them so annoying. Then the only way I got to join them was with the help of “in vitro.” Hence “In Vitro Fertility Goddess.”
What prompted you to write the book? Who did you imagine as your intended audience?
JP: I didn’t write it with an intended audience in mind. It was based on a diary I was keeping as a sanity clause during the infertile years—the miscarriages, the drugs, the herbs, my mother’s sex tips, IVF, and the troubled pregnancy spent mostly in bed. When I looked back on it I thought there’d be stuff there that many sufferers of infertility would relate to and from feedback I’ve received they have.
However I have found that the response from the ‘fertiles’ who’ve read it has been unexpected and amazing. They’ve said it’s given an insight in an easy-to-read way on what friends and family have gone through and really changed their ideas on what it means to struggle to have a child. And it’s made plenty of them feel more privileged to have had their children easily. And, dare I say, even appreciate their children more.
In the book, you write about the homicidal thoughts you had about pregnant women, your obsession with your basal temperature and bodily signs, your frustration—even anger—with “fertiles.” Were you ever nervous about laying yourself bare like that?
JP: I think when you are writing autobiographically it has to be a risk you are prepared to take if you are being honest about your subject. Otherwise you can disguise it and turn it into fiction but I don’t think it has the same impact or resonance with the reader.
How have people responded to the book? Have any family or friends read it?
JP: My father made sure that all the family read it. Nobody was spared, including a seventy-eight year old uncle and ninety-year old great aunt. Which goes to show that there’s something in it for everyone—you’re never too old to read my book.
Interestingly enough the friends who have been closest to me during the years of struggle to conceive have reacted with utter surprise to see what it was really like for me. They’ve said they had no idea and why didn’t I talk to them? To which I’ve said, “Well it’s a bit hard when somebody calls and asks what you’re up to, to say, ‘Oh I just spent two hours with my hand in my vagina checking my mucus. How about you?’” Of course, now they all know that’s what I was doing and dinner parties have never been the same.
Do you think your daughter Nina will read the book one day? Whose reaction did you worry about the most when writing the book?
JP: It was my mother that I worried about the most, the fact that she would now know that I had sex with my husband and in what positions. As far as Nina goes, I think by the time she decides it’s cool to read mummy’s book I’ll be demented and in a nursing home, being an older mother and all.
Your book is very funny, especially for such a serious subject. Was the experience of infertility only funny in retrospect, or have you always used humor to deal with things?
JP: It is pretty much a survival technique for me, to lampoon anything I find scary. It gives me back a sense of power in situations over which I have no control. You know, I may not beat you but at least I can poke fun at you.
[Part two to follow.]
May 12, 2008 •
Donna Dickenson is one of Britain’s leading experts on medical ethics. As professor of medical ethics and humanities at Birkbeck College in London, Dickenson has written on a variety of topics, including death and dying, assisted reproductive technology, the patenting of the human genome, and women’s health. In 2006, she became the first woman to win the prestigious Spinoza Lens prize for her contribution to the public debate on ethics.
Professor Dickenson’s latest book is Body Shopping: The Economy Fuelled By Flesh and Blood, a look at the rapidly growing trade in the human body. She kindly agreed to discuss her new work in an interview with Conceptions. Those in New York can see Prof. Dickenson in the flesh during her book tour on June 18-19. (For more details, see her website, www.donnadickenson.net.)
[Interview conducted, edited, and hyperlinked by Cheryl Miller.]
What is “body shopping”?
DD: I use the term "body shopping" to refer to the way in which human tissue, genes, gametes and organs are becoming consumer items like any other.
In your recent op-ed in the London Times, you write that the "'God vs. science' has become a dangerous distraction." How so? What kind of debate should we be having?
DD: In the Sunday Times article, I argued that the vituperative slanging match into which our debate on the Human Fertilisation and Embryology Bill has descended is diverting attention from serious ethical, economic and political issues about the widespread commercialisation of biotechnology. Debate has centred almost exclusively on "human admixed embryos," created from an enucleated cow or rabbit egg and a human somatic (body) cell, with religious figures lining up against this development and scientists insisting it's necessary for somatic cell nuclear transfer stem cell research. But there are many other important issues centring on the activities of biotechnology firms, such as the clinically dubious "product" offered by private umbilical cord blood banks, or the defensive patenting of human genes with an adverse effect on patient care. The 'God versus science' cliché, however, means that even a secular bioethicist like me risks being branded either a 'Luddite' or a 'God-botherer' for daring to pose ethical questions about scientific developments and their commercialisation.
The medical research community has long argued that ceding any ownership rights over tissue to donors will lead to patients buying and selling their own body parts. Should we own our own bodies? And if not, who should?
DD: It's quite odd for the medical research community to make this argument, when they see nothing wrong with commercial firms buying and selling intangible property rights in genetic sequences, or stem cell lines derived from donors of somatic cells and oocytes. The law has been equally contradictory: traditionally the common law viewed tissue taken from the body as res nullius, no one's thing, and therefore refused to allow patients like John Moore to exercise any rights over cell lines made from their tissue. If res nullius is taken to its logical conclusion, however, it should mean that no one, including researchers, universities and biotech firms, has any rights over cell lines of other forms of tissue either. But I don't actually advocate that we should own our bodies unreservedly: instead I favour more communal systems, such as the PXE model in which patient groups and biotech firms share rights over gene patents.
If we do “own” our own bodies, why aren’t we entitled to sell off an egg or kidney if we so choose?
DD: As I say, I don't believe that we do own our bodies straightforwardly, although I do think that in cases where considerable labour has been expended--first and foremost, egg donation, which has been estimated to require up to 60 hours' labour--the donor should have some rights on a Lockean basis of having 'mixed one's labour'. Even if we did own our bodies, ownership rights in our common law are generally seen as a 'bundle of sticks', from which certain forms of control are chosen appropriate to the need in hand. You might have a right to donate your tissue but not to sell it, for example, as these are separate sticks in the bundle.
Many have argued that without payment, there would be a shortage of sperm and egg donors--as there is of kidney donors. If we use altruism as a principle for all tissue donation, how can we avoid a shortage of available gametes, or determine a fair way of rationing available resources?
DD: This seems to me to be a rather narrow outlook. Only the United States, so far as I know, operates a full-fledged system of egg and sperm sale, but other countries manage perfectly well with a more altruistic system. European countries generally pay expenses only, although the amount varies quite widely--but nothing like the exaggerated amounts paid for 'desirable' eggs in the US, up to $100,000 per cycle from blonde, tall, musical and athletic young women. Where there are shortages of eggs and sperm in European systems, they have more typically been caused by changes in regulations about donor anonymity than by any failure of altruism.
In your book, you note the different ways in which egg donation and sperm donation are treated under the law. You observe, "The assault on freedom is only noticed when it begins to apply to men." Are women more vulnerable to biotech predation? How so?
DD: That point doesn't arise from my discussion of egg or sperm donation; rather, in the last chapter, I argue that we all have 'feminised' bodies now insofar as all bodies are increasingly assumed to be open-access. The tremendous publicity given to the patenting of the human genome--one in five genes are now patented, affecting both sexes equally--contrasts with the very minimal publicity given to the demand for women's eggs in 'therapeutic cloning'--in some cases under conditions which may welll have been coercive, as in the Hwang Woo Suk scandal. Female tissue is still more valuable, but both sexes are vulnerable to 'body shopping'.
You have warned that women who donate their eggs for stem cell research could be at risk from life-threatening side effects. Do you think egg-harvesting and stem cell technologies will become more effective and safe in the future, and would that dispel some of your present concerns?
DD: We are seeing good scientific evidence that low-dosage ovarian stimulation regimes produce just as good overall results in IVF as high-dose ones, even though fewer eggs are 'harvested'. But research in somatic cell nuclear transfer research still requires very high numbers of eggs because the technology is very wasteful (Hwang used over 2,200 eggs to create precisely zero stem cell lines). I am more hopeful about the possibility that SCNT [somatic cell nuclear transfer] will be bypassed altogether, if induced pluripotent stem cell lines do indeed fulfil their promise, since that technique doesn't require human or animal eggs. Last week, by contrast, the upper house of the Western Australian parliament voted against a bill to allow SCNT research on scientific grounds, that the technology had failed to deliver on its earlier promise and the ethical issues around taking eggs from women were too overwhelming. This can be seen as a victory for the attempts made by activists and academics such as Marcy Darnovsky, Sarah Sexton, Diane Beeson, Cathy Waldby and myself to ensure that the risks to women became better known.
Critics argue against organ selling and surrogacy on the grounds that the poor are more likely to be sellers, and that the procedures in question are risky. Yet we allow people to take on dangerous jobs. Further, many argue that serving as a surrogate or selling an organ is their best available option. One Indian surrogate explained her decision thus: "This is not exploitation. Crushing glass for 15 hours a day is exploitation." Are organ selling and surrogacy somehow different from other "exploitative" work?
DD: Freedom of choice is not a knock-down argument. Even where we allow people to 'choose' dangerous jobs, we retain health and safety laws to limit the risk. But few such protections exist for commercial surrogates, particularly in the developing world. In addition, we need to look at the massive difference between what the surrogate is paid--even if it seems a lot to a poor Indian woman--and the profits of the commercial agency arranging the transaction. One US agency, for example, pays surrogates $25,000 but charges $100,000. Most of that $75,000 difference is pure profit. Unless you really think the agency has contributed three times as much of the 'value' of the baby as the birth mother, you would have to classify that as exploitation because the rightful contributor of the value has been shortchanged.
How can we work towards finding treatments for serious diseases without commodifying our bodies? What policies can lawmakers adopt to protect people from exploitation without impeding medical progress?
DD: We will be much more likely to find treatments for serious diseases if we can rectify the grossest abuses of body shopping. The biotechnology industry has been allowed to claim that it is the greatest promoter of medical progress, when in many cases it is arguably the greatest hindrance. That's particularly true where defensive gene patents or restrictive licensing agreements block researchers from developing alternative, better or cheaper cures. A single company, Myriad Genetics has patented the BRCA1 and BRCA2 genes involved in some breast cancers, meaning that in the United States (though not in Europe) a clinical diagnostic test for those genes can only be afforded by those who can pay the fee. Lawmakers and judges need to be much more sceptical about the abuses of genetic patenting in particular; this process has begun in Europe but is still largely ineffective in the United States.
One chapter in your new book is subtitled "Resistance is not futile." But the rise of medical tourism would seem to make legislating an impossible task. If all you need is a passport to buy an egg or find a surrogate mother, how can we effectively regulate biotechnology?
DD: The globalisation of the biotechnology industry does indeed made regulation more difficult, but it's not impossible. In Europe there is now a tissue directive binding on all EC countries, which makes egg sale for IVF illegal. Some European countries, particularly Germany, prohibit their citizens from buying surrogacy or eggs abroad, as well as on German soil. Similar laws exist in some countries in relation to sex tourism, especially with minors, so where the political will is there, a way can be found.
May 5, 2008 •
Part Two of my interview with Sharon LaMothe below. For Part One, click here.
Surrogacy has been all over the news lately, what with Baby Mama and the recent Newsweek cover story. Why do you think people are suddenly so interested in surrogacy?
SL: People are putting off children later and later in life. I don’t see Mademoiselle or Redbook saying, you know after 32, your egg production is really falling. I don’t see any warnings about how your fertility starts to go downhill in your early 30s. I think that people think as long as they feel healthy, they won’t have a problem. In reality, it doesn’t matter how healthy you are on the outside.
When you can’t get pregnant and want to have a baby, surrogacy seems to be the way to go. There are people who go the adoption route. But with adoption, the mother can change her mind, if the father isn’t on board with it that can be a battle, you don’t know what you are going to ‘get.’ With surrogacy, you’re pretty much guaranteed nobody can change their minds.
Have you seen Baby Mama? What did you think?
SL: I have not, but I’m boycotting it. I saw several previews and read the articles. There’s so much wrong with it: an ignorant, money-grubbing woman from the sticks just out to get what she can from some poor desperate woman who can’t have a baby on her own. Maybe I’ll get it from Netflix, but I’m not going to the movies to see it.
What do you think about the globalization of surrogacy?
SL: What really bothers me about that is they’re not even meeting their intended parents. Why is that woman a surrogate? She’s a commodity, an incubator. All she knows is she’s getting a paycheck. That sounds like baby-selling to me.
Western women have very different expectations. Here you meet each other and see if you have a connection. And if you have no connection, what makes you [intended parents] think these women are going to watch their diet and their exercise? If you are taking care of something for someone else—anything, even if it’s just a car—you are a little more careful when you know those people.
What do you hope to achieve with Infertility Answers?
SL: Infertility Answers is a website that an attorney, Robert Terenzio, and I are putting together because there are so many questions out there from the novice. The blog, Surrogacy 101, is answering and being really forthright about what I think intended parents need and what surrogates need.
What would you say to a woman considering surrogacy?
SL: Do your research. Talk to people. Make sure you’re ready to make that time and commitment. You do end up sacrificing your family time. You being pregnant for yourself and your husband is a whole different experience than being pregnant for somebody else. You have all these people on your shoulder that you are accountable to, and that can cause a lot of stress.
May 5, 2008 •
I'm pleased to introduce a new feature here at Conceptions: a monthly interview with someone from the ART world. I hope to get a variety of perspectives: doctors, attorneys specializing in reproductive law, agency owners, bioethicists, activists, would-be parents, and many more. If you're interested in participating, please drop me a line at cmiller [at] thenewatlantis [dot] com.
For our inaugural interview, we have Sharon LaMothe, a real-life "baby mama." Sharon is a two-time gestational surrogate, giving birth to twins each time in March 2000 and January 2005. She also runs her own surrogacy agency and is the proprietress of Infertility Answers, Inc. At her super-informative blog, Surrogacy 101, she dispenses advice to surrogates, donors, and would-be parents.
[Interview edited and condensed by Cheryl Miller. Part two to follow.]
How did you first learn about surrogacy?
SL: I knew a couple—they were really more acquaintances than anything else. They lived in Florida, and I was living in Rochester, New York at the time. The husband came to me and just said casually, “We’re thinking about adopting.” He had a son from a previous marriage, and they had a daughter who was a day younger than my youngest daughter.
I actually talked to my husband even before I approached the couple. We had secondary infertility so that came into play with me personally. You have women out there who say, “I don’t want to be a surrogate for someone who already has children.” I felt more of a connection with my first couple.
How old were you for your first surrogacy? Why did you choose to do a second surrogacy?
SL: I was 36 for my first surrogacy. My second surrogacy was for a gay couple in New York. They had been together for 16 years. I had met them through another client of mine. I talked to them for about a year.
I realized that doing this for a gay couple wasn’t as “popular” a choice for women. I think that made a huge difference to me. And to be perfectly honest, my age came into play. I had wanted to be a surrogate one more time, and I was 39 when we first started talking. I was 40 when I got pregnant, and I ended up giving birth at 41. Do I recommend giving birth at 41? No, it was a little harder than I thought.
When you do this for someone, I know a lot of people focus on the intended parent, but the grandparents are just as excited. You’re making uncles; you’re making aunts; in some cases, you’re adding siblings to the family. You’re adding a branch to that family tree.
How important is the money?
SL: A first-time surrogate with insurance, she may sign a contract for $18,000-$20,000—realizing that she’s not going to get more than a $1,000 until she’s actually pregnant. That’s a confirmation of pregnancy, which is usually via heartbeat and is 4-6 weeks after transfer. So money-wise, it’s really not a heckuva a lot. When I talk to surrogates, if the number one question is “how much can I get paid?” that’s a red flag for me.
What I do hear a lot of is women mostly have all the children that they want but they love being pregnant and they know someone who has struggled with infertility. They feel they have something to offer another couple. They have children, they love family, and they want other people to experience that as well.
[But] you’re not going to do this for nothing. You don’t want that resentment of “Oh, I have to pay my co-pays.” It’s not an easy thing to go through a pregnancy even for yourself. The intended parents should be the ones to take care of you. And in taking care of you, it is a form of bonding. It’s a form of claiming that baby as your own; it’s a way of saying [to their future child], “I may not have carried you for the nine months, but I was there every step of the way.” And there’s a sense of pride and ownership with that.
So if it’s not the money, what motivates surrogates?
SL: When you get to add to a family tree, when no one else has stepped up to the plate—not a sister, not a cousin, not a friend—it makes you feel like you were chosen to help them. Which is why people do it more than once—you want to recapture that feeling of being important. Families tend to take moms for granted, but when you step out of that circle, you aren’t taken for granted. You are special, more special than anyone else for that nine months or more. That can be an addictive feeling, maybe not the most healthy. It’s really a natural high.
What fears did you have? Were you ever worried you’d grow attached to the baby?
SL: I absolutely never thought of growing attached. You know what the biggest problem with surrogates is? They’re attached to the intended parents. Their feelings are hurt when they’ve had constant email/telephone contact—even, if the intended parents live close, weekly contact—especially toward the end of the pregnancy when you have all those appointments when you’re meeting at the OB’s office and you have lunches out after.
All that kind of intimacy, and then the parents go home with the babies. They’re not getting any sleep. They’re adjusting to having one or two little lives in their home. They don’t have time to get on the computer and e-mail you every day anymore. Even once a month is a struggle. That kind of separation is the downer of it all.
Even if you remain friends, it’s really not the same because they have what they wanted. As grateful as they are to you, as wonderful as the whole relationship is, they don’t need you the way they used to.
What kind of problems might arise between surrogates and IPs?
SL: As petty as these may seem, they’re important. For instance, I would have an intended parent call, “I just had lunch with Suzy Q. and she had three iced teas, and we’re worried about her caffeine intake.” Or “she’s about to go on this trip and she’s 28 weeks pregnant. We’re not comfortable.” I’m not making this up. These are calls that I actually have gotten. “She’s a nail tech and we’re concerned about the fumes. We’d like her to quit work sooner than we agreed.” And here’s my favorite: “So-and-so’s pregnant; she’s about 30 weeks. Can we stop her from having sex?”
An agency’s job is to calm the concerns and find out where these concerns are coming from. You can say, for the sexual issue, “Call your OB or your surrogate’s OB and ask her these questions.” What you can do is to guide them to the professional who can answer the question better than you. The agency's role is to smooth out what the expectations are. Whatever the expectations are at the beginning, they are going to change.
[Part two to follow.]