How to Make a Family: The Blog

Teaching Ethics to & Instilling Morals in Scientists. After the Fact.

I'm reading Challenges for modern scientific writing and editorship: have we lost our moral compass? on Reproductive BioMedicine Online.

My random thoughts as I read this apparently necessary finger-wagging by the editorial staff of RBM Online: 

They're using Wikipedia to start their definition of scientific misconduct. Hm. Huh. (No opinion here, just stating the facts...) That is certainly reflective of a shift.

I'm often asked how I can write on the same topic (fertility and reproductive medicine) for 15 years without copy-pasting my own stuff over and over. Seriously? I can manage to do that (not plagiarize myself) for things like consumer blogs and magazine articles by the hundreds, but researchers can't do it for high-brow study articles? Maybe it's yet another benefit of my sieve-like brain... I can't remember from one day to the next if this is the first thing I've written about oocyte cryopreservation or the 20th, let alone know on which hard-drive any previous files exist. But ask me what's in my pantry and fridge, any time, any day. 

I will admit this: my own kid, who is precociously bright with an advanced wit of his very own, sometimes posts things on his Facebook page that make me wonder... So I ask. Maybe too often. "Did you make that up?" It's clear that there's a little generation gap on this topic.

Glad to see they're offering "workshops on scientific writing at international conferences that focus not only on how to write a scientific report but how to do so in an ethical and responsible manner." It would be even better, though, to start that educational process a little earlier, like, maybe in elementary school.

Make Your Mark: Sign Up For the IFRR

I'm not sure why it took so long for me to get around to this, but I finally signed up as a volunteer participant with the Infertility Family Research Registry (IFRR). I'd like to encourage others to do the same. But I know I might be sort of odd this way...

I'm one of those people who actually digs marketing survey phone calls (as long as they're not too long and don't come at dinner time), mostly because I did enough research as an undergrad to have pity on study authors. I've also earned a buck or two over the years in focus groups. What's not to like about getting a check for telling folks' your opinion on products and services?

I don't expect dinnertime calls from the IFRR; in fact, I'm not so sure they'll even be contacting me ever. After all, my experience as an infertility patient is a fortunately fading memory now. But that's just it -- good research often depends on good controls. Current patients might be exposed at clinic visits to queries for study participants, but how often are those of us who've been-there-done-that anywhere near that information pipeline? And frankly, once you've 'resolved' your infertility in whatever way, how inclined to help do you feel after the fact?

The IFRR was announced at last year's ASRM gathering and is fully SART-approved. I've asked around the 'in the know' circle. IFRR is not only legitimate, it's just about the only attempt of its kind. The purpose of this registry is "to maintain a list of individuals who can be contacted about participating in research studies of infertility treatment including health risks." The Registry aims to cull together patients and former patients, but also people who've never needed to darken a fertility expert's door. Naturally, they also want to bring in any form of third-party reproduction -- egg and sperm donors and gestational or surrogate carriers. The fertility gamut, in registry database form.

So I took some time -- all of 15 minutes on the library's Ubernet -- to sign up and fill out the questionnaires. Piece o' cake, and there aren't many of us who don't like being asked a few simple questions about our attempts at pregnancy and our outcomes. Quick multiple choice stuff. So now when some researcher wants to conduct a large-scale study (often the best kind), it may be simpler for them to find the number of subjects needed to render strong conclusions.

Now, I get that some folks are leery about revealing personal data online, and the first thing participants must do is sign (either on paper or online, your choice) a document typical of research studies that, among other things, spells out that you can bail at any time. If I'm contacted by a researcher using the IFRR database, I can choose to participate or not. Also, there are scattered throughout the questionnaire plenty of options to check "Would rather not say" or "I don't know". You can reveal what you want. Then be on-call for studies or not.

I'm pretty sure I missed my calling as a scientist. I'm just enough of a geek to adore research, but I'd really rather yammer about the forest than conduct tree-to-tree studies. And since I'm lucky enough to not only have resolved my own infertility but also to make a living (of sorts) from it, I think the least I can do is put a few of my story's details on a list for future use. 

Where I Imply That You May Not Have a "Right to Life" (or anything else, for that matter)

Oh, boy. Another time and post where I set about putting myself out there and quite possibly inserting my foot into my mouth. But at least I'm clear on the risks. 

Let's start here: I think harming other lifeforms is not The Thing To Do. 

And here's another facet of that whole What Do I Believe About Life gem: I think telling someone else what to do with their life is not The Thing To Do.

And how about this addendum: I believe that reasonable, flexible boundaries are a prerequisite for peace.

You can argue against and around all of the above. But I bet nobody would argue against this one: I think every human wants to feel peace.

What does any of that have to do with the infertility industry? This: In our silly national debates over health care, the apparition of rights -- right to access health care, right to insurance coverage specifics, and accordingly, the right to life -- is wafting through it all like the ever-present, silent mist that nourishes a life-filled rain forest (on a good day).

With any luck, we will all get very wet from the debate process. But who's listening?

Three pieces today -- and just three, but there are more; have been and will be -- that conjured up this morning's philosophical nature in me:

My morning ramble's starting point: The video that's making the community's rounds, Is Infertility Treatment a Right or Privilege? 

[insert Big Sigh] How unfortunate that this is a Fox-produced video. I extricated myself from the Hell of TV Watching years ago, so on the occasional glance I take to spy on What Others Are Viewing, I have to remind myself that I wasn't around for the slow, hair-growth-like transformation that TV Watchers underwent in their tolerance levels. After I shake off the unnerving feeling that I'm being yelled at by talking heads, I do my best to watch this drivel with a little bit of calm objectivity. The only good I see coming from such "debates" (how special that the "journalist" is a new RESOLVE Board member! did I hear that right?) is that maybe -- just. maybe. -- thoughts about the bigger picture will be conjured up in a wider swath of minds.

Then, in a media format a little more palatable to my out-of-sync brain, a piece by Liz Zemba on the Pittsburgh Tribune-Review's site, Debate swirls around overseas surrogacy 

It's a good introduction to what Arthur Caplan calls "a weird version of medical tourism." Weird, indeed. Another term you might use is "nauseating." 

My eyebrows first furrowed in paragraph one, where the couple who's started a surrogacy service gave up on adoption "after 22 years of marriage" -- where's the 'why'? On their business website, that's where. The Hui-Wee's cratered under the adoption option because of "too much red tape, too expensive, or too much competition." Their surrogacy journey wasn't a piece of cake, either, but at least they got a baby out of the deal.

On The Telegraph, a review by Jim Endersby of the book "Unnatural: The Heretical Idea of Making People" by Philip Ball

I've always enjoyed using phrases like "making people" (usually "making babies" when I can get away with it) because it brings down to a fine-point all the more euphemistic terms, many of which I generate right here at my laptop, in the field of reproductive medicine. 

Endersby's review is the first I've heard of "Unnatural", and it's a positive one. He does finish his coverage by stating plainly, "I found myself persuaded by Ball’s ethical and practical arguments, yet unconvinced that the benefits of making artificial people are sufficient to justify the costs."

Instead of meander on and on about what I think or how I think the dots are connected up there, I'll just rest my fingertips and let the silence do the talking.

 

Egg Donors: The Forgotten Segment of the IVF Industry

[Editor's note: In a recent blogpost here, Angie Best-Boss wondered aloud about how she'd feel if her daughters made the choice to donate their eggs or to use donor eggs to conceive. In that post, Angie referred to an essay by Jennifer Schneider, M.D., published recently in the ASRM's Fertility & Sterility. We have received permission from Dr. Schneider to publish here that case report, "Fatal colon cancer in a young egg donor: a physician mother's call for follow-up and research on the long-term risks of ovarian stimulation", along with her related opinion piece below...]

Egg Donors: The Forgotten Segment of the IVF Industry
By Jennifer Schneider, M.D.

The phone call from the gastroenterologist across the country was a parent’s worst nightmare. He said, “I just did a CT scan of your daughter’s abdomen, and it’s bad news –  she has cancer involving her colon, both ovaries,  lymph nodes, and throughout her belly. We think the primary is colon cancer.”  He called me first, because he knew I’m a doctor, and wanted some help giving her the results.  I knew immediately that her survival would be measured in months, even with the best treatment. Sitting in the airplane a few hours later, I kept asking myself, how could this be?  There’s no history of colon or ovarian cancer in her family. She felt fine until a month earlier, when she began complaining of abdominal pain. How could a 29-year old suddenly be diagnosed with far advanced colon cancer? 

Jessica was a composer and film maker, and throughout the following months of chemotherapy, surgery, and palliative radiation for bone and brain metastases, she worked hard on an opera she was composing, racing the clock to complete it in time to see it performed.  She survived for almost two years, but missed the opera’s opening by three weeks, and didn’t get to read the rave reviews.  Jessica was 31 when she died. 

The only unusual factor in Jessica’s medical history was that at age 25 she had been an egg donor. She had been enticed by the ads and posters at her elite university offering large sums for egg donation.  She had told me about her plans in advance, and my main concern was her safety.  She reassured me,  “The agency told me they use a reputable IVF clinic and experienced doctors. They said that other than a small risk of bleeding or infection from the egg retrieval, there’s no problem.” After the first egg retrieval cycle, which resulted in a pregnancy, the agency offered twice the payment for the next because this time she was a ‘”proven” egg donor. A third cycle then followed.

Since her death I keep thinking about a possible connection between my daughter’s cancer and her egg donations. High doses of hormones are used to stimulate the ovaries of infertile women trying to get pregnant, as well as women who provide their eggs to assist infertile women or for stem-cell research. The goal is to produce multiple eggs. Many of the drugs used for egg retrieval have not been adequately studied for long-term safety and have not received FDA [Food and Drug Administration] approval for such use. Could the repeated exposure to high-dose hormones have led to my daughter’s cancer? The answer is, we don’t know.
 
Because egg donors are young and healthy, their risk of cancer is low, so  to obtain meaningful results, large numbers of women must be studied for many years. Records of these women would have to be kept starting at the time of the procedure, and routine follow-up instituted.
 
Incredibly, this is still not standard practice. Egg donation is usually anonymous, and once the donors provide the eggs, they are of no further interest to IVF clinics. The few published studies have all been retrospective, that is, finding women who have had ovarian stimulation in the past and obtaining information on their health.  So far some studies have shown slight increases in uterine cancer, breast cancer, melanoma, and thyroid cancer. But because the numbers of cancer cases were small and the time elapsed since egg retrieval often short, results were inconclusive. 

In 2001 the Ethics Committee of the American Society for Reproductive Medicine called for further study of the medical and psychological effects on donors and suggested that every donor should have a physician whose primary responsibility is caring for her.
 
In 2003 alone there were about 13,000 assisted reproduction cycles involving oocytes (eggs) provided by egg donors in the U.S.  Thousands of young women are selling or donating eggs despite the absence of data that would allow them to make informed decisions about their risks.  Most of them do not understand that there is a huge difference between being told “We don’t know of any significant long-term risks” and “There are no significant long-term risks.”  In the U.S., college students especially are recruited to become donors by posters offering large financial incentives.  And now the use of oocytes for stem-cell research further increases the demand for egg retrieval.

In September 2006, the Institute of Medicine (IOM) and the National Research Council of the National Academies of Sciences (NAS)  organized a workshop of experts on the risks of assisted reproductive technology. Their 2007 report concluded, “There are no registries that track the health of the people who have taken part in IVF, and much of what is known about the risks for women participating in IVF [i.e. infertile women seeking pregnancy] may not be directly applicable to oocyte donors. . . . It will be important in the coming years to accumulate extensive health data for women whose eggs are harvested and to monitor them for long-term effects.”

Despite repeated calls to action, very little has been done, for obvious reasons, chief of which is the conflict of interest that IVF clinics and researchers have in balancing money and multiple eggs per retrieval versus the health of the donor.   IVF clinics are cash cows, providing lucrative returns and often funding academic departments and organizations with which they may be associated.  Stem-cell researchers who use oocytes are concerned primarily with maximizing the number of eggs they obtain. Additionally, many egg donors, especially college students who use the payment for tuition, may want to remain anonymous and not be on a registry. Finally, long-term prospective studies are expensive. Registries and studies will probably never happen until one or more government agencies mandates keeping track of egg donors and funds the research.

I am very much in favor of IVF, which makes it possible for many families to have children when otherwise they would be unable to do so. But we need to know with greater certainty what the risks to the egg donors might be.  Jessica did not have such information when she made her decision.  Only when the studies are finally done will young women who are considering egg donation be able to make truly informed choices. 

Offspring Pursuing Their Ancestry: A Story Worth Watching

I'm trying, really I am, to find a good reason for preserving the anonymity of sperm and egg donors -- beyond the fact that a ban on that anonymity will most assuredly result in a tremendous downturn in the number of donors.

But under the umbrella of "walk a mile in her shoes," I cannot see reasonable folks looking at the circumstances of 26-year-old Olivia Pratten, British Columbian daughter of an anonymous sperm donor, and saying that she should simply hang up her hopes of finding out anything more about half of her genetic material. More, that is, than what she does know about her genetic father, which amounts to "he was a healthy Caucasian medical student with a stocky build, brown hair, blue eyes and type A blood."

Surely no one would say with any ease that donor offspring don't have a right to know their ancestry better. Doesn't it make perfect sense that being institutionally unable to find out more than vague descriptors could wreak havoc on even the most stable of psyches?

I must admit to a bias here, based on a real-life family secret. No, I am not the mother of a donor offspring. Still, their plight strikes a chord in me because of my own mystery inheritance, based on the ignorance and fears and related policies and procedures of the past. My father started out in the world as an "illegitimate child" -- a term which, for the record, I find antiquated and as useful as "divorcee," a label that I have never identified myself as, though it is technically true. Both are purely legal in use, yet have always been filled with emotion-packed social stigma. Craziness.

Fortunately for my infant dad, his stepfather adopted him. However, because of the hush-hush-ness of such doings back then, everyone kept the truth from my sweet, funny, easy-going father until just before he left for Germany during the Korean War. That had to be one hell of a send-off. Here you go, barely out of high school, across the ocean by ship to play a role in an unsettling conflict, and -- surprise -- your "dad" isn't really your dad. And we're not going to tell you much about the man from whom you came genetically.

I don't know the real extent of damage to my dad, but it was there. It wasn't until he was in his 60's that my father started exploring and located a couple of half-siblings. Both of his fathers were long gone by then. The secrecy was passed on, as my sisters and I were only informed after our grandfather (my dad's stepfather) died when I was a preteen. I recall being confused at the time, and sad for my dad, but the final impact arose when I was in my late 30's and struggling to keep a pregnancy beyond the first trimester.

My then-husband and I grew up in different states with completely different family names all around, but we shared a little background in that we both have distant kin in Sweden. When I started learning about the myriad possible causes of early miscarriage, you can believe that my mystery grandfather entered my mind.

In the end, all worked out well for me and mine. That is, I finally managed to keep an embryo, then fetus, then baby inside me long enough for him to be born healthy. Truthfully, I still don't know if there are any genetic connections between my ex-husband and I; there haven't been enough prerequisites to delve.

I don't often think of my mystery relative: a man who lived about a hundred miles from where I do now, who was considerably older than my grandmother, and who had an Anglo, maybe British, name -- my own "real" last name, by blood. But there are times, and plenty of them, when I meet people with whom I feel an instant connection, a complete rapport... just like family. And I wonder.

So, you see, I try to view from a "rational" perspective the arguments for maintaining donor anonymity. I wish I could be objective about this very important issue that is in flux in Canada, having been put to bed in a few European states, and is being tiptoed around in the U.S.

But as one of the wiser supervisors I ever had in social work told me during my job interview (when I was still quite idealistic and naive as the sky is grey-blue,) "I've never counseled an object." In some matters of the heart, like where we came from, there is only the pang of subjectivity.

Read up on Olivia Patten's pursuit of the facts and on a British Columbia supreme court decision that could have important repercussions, in this Globe and Mail article by Zosia Bielski:

ANONYMOUS DONATIONS: ARGUING FOR A BAN

Sperm shortage possible after landmark decision

Living Like There's No Tomorrow: To License Infertility Helpers or Not

I've been watching the conversation online about licensed infertility healthcare providers vs unlicensed (sometimes untrained) consultants. The ideas being expressed with passion bring me back to the good ol' days in two other realms I've haunted.

I am so old that I was a substance abuse counselor before there were licenses for such. Barely out of high school myself, I ran around trying to convince suburban parents that their middle schoolers were using drugs. Got a lot of laughs from the audience back then. Obviously this was pre-War on Drugs. Around the same time, rumblings were increasing that would lead to state licensing of chemical dependency counselors around the country. I could've 'grandmothered' in once the furor subsided and become a CADAC, but by then, I was done with cajoling parents and staring down wasted kids.

Years later, this time with Social Work license in hand, I was a case manager in another unploughed territory, serving HIV-positive women and children. For six years, I acted in roles a bit equivalent to what we're seeing more of now in the repro med arena -- I was a professional hand-holder.

My clients during those years were, like infertility patients, learning to live a new kind of life that required dependency on professionals to get through what had been thrown at them. Of course, in their cases, the choices they and their treatment teams were making could literally impact their survival. This was when HIV was still a vastly misunderstood entity, and most people died from it.

You would think that such a scenario might result in public uproar to pour every available resource into finding a way to stop the dying and the incredible poverty of existence that came before the sometimes merciful end. But that's water under a broken bridge now.

There were no experts yet back then - other than those whom the government-granted and granting agencies had deemed worthy of administering help, often for purely political reasons. It was quite true of both fields that much depended on who you knew and being in the right place at the right time.

In both situations, para-professional caregivers and volunteers led the charge for patient advocacy and rights. The few licensed pros (and they were far fewer than we have in repro med) often found themselves in positions of defense, rightly or wrongly.

The truth back then, as it is now, was just as Pam Madsen says: there's plenty to go around.

Middle-class 'burb parents in the late 70's scoffed -- literally laughed -- at the crazy idea that their "little" junior high kids would have the audacity to use drugs. Ten years later, those still with living children were struggling to make sense of their prior judgments.

In the late 80's and early 90's, a similar cohort of public believed that a deadly virus could be contained within invisible boundaries imagined to be between groups of people. How wild was it when, in 1992, a white middle-class woman named Mary Fisher revealed her HIV-positive status at the Republican National Convention?

Yes, these human conditions -- drug abuse and HIV -- might be in a different category from infertility in many ways. But my point is this: the numbers of people in need can leave an entire nation -- not just the individuals involved -- staggering under tremendous weight.

Let the first licensed professional who truly believes that he or she or they can manage the need alone, without many helpful hands, licensed or not, step forward.

Keep Your Job & Get Pregnant, Too

Federal appeals court in Illinois has connected efforts at getting pregnant with being pregnant. The decision: that women who need to take time from work for infertility treatment can rely on the Pregnancy Discrimination Act to protect their jobs.

This ruling is a good sign in the direction of truly family-friendly employment. It also reflects the ongoing confusion about how fertility treatment should be regarded in the arena considered 'medically necessary treatment' and related leave.

Unlike my confusion over whether or not all fertility treatment should be considered medical healing (and therefore always 'deserving' coverage by insurers, in my mind...), I'm clear on this point: folks who go through what they must to endure IVF treatment in particular are indeed already thinking like parents.

The trials and tribs of IVF are similar in many ways to the rigors of parenting. I'm preaching to the choir here, so I'll not detail the IVF journey. For those who are still struggling through it with no baby-end surely square in their sights yet, there's nothing wrong with feeling good that you are doing more than most people just to have a baby.

You, who are priming your bodies and crossing your fingers (or kneeling with folded hands) at the side of a petri dish, deserve to have your efforts supported by the same act that has been protecting mamas with babies already in tow.

Women Battling Infertility Find a Friend in the Court

New Court Decision: Pregnancy Discrimination Includes Infertility | Making It Legal.