How to Make a Family: The Blog

Sticks & Stones

Today, the American Society for Reproductive Medicine reminded us that words wield power.

On the same day, I've been asked by separate entities to (a) bend the truth in writing and (b) craft readable messages for patients -- on a gratis basis.

Ah, the life of a Mighty Wordsmith.

First, the ASRM notified us mediafolk that the World Health Organization and International Committee for Monitoring Assisted Reproductive Technologies have released a new glossary of ART terminology. Included is the heavily applauded, clear definition of infertility as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse.”

Adding 34 terms to the original glossary, the revision (published as a 'special contribution' in both Fertility & Sterility and Human Reproduction) emphasized words that define outcome measures, safety, and efficacy.

Later, the ASRM's Ethics Committee issued a report decrying the use of adoption terminology in relationship to embryos. The vast majority of fertility specialists prefer a strictly clinical stance on the subject of embryo donation.

According to Dr. Robert Brzyski, Committee Chair, "Home visits, judicial review and other adoption procedures are not necessary and not appropriate for a patient whose care entails what is most accurately characterized medically as a tissue donation."

These attempts at careful fine-tuning of our perceptions come just before a national meeting has been called to discuss "The Adequacy of ART Oversight" in December.

This feels like real progress on the parts of fertility industry leaders. Now, let's see if we can get the parallel services (like websites) to recognize the truly crucial value of words.

Sources:

Zegers-Hochschild et al, International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) revised glossary of ART terminology, 2009 Fertility and Sterility,  November 2009, Volume 92, Issue 5, pp. 1520-1524.

The Ethics Committee of the American Society for Reproductive Medicine, American Society for Reproductive Medicine: Defining embryo donation, Fertility and Sterility, Vol.92, No.6, December 2009.

You Can't Tweet That! Can You?

Now that my son is a mind-bending 10 years old, there are a lot of scenes like this in my house:

Little T: "Hey, Mom, [insert twisted witticism that only a child of mine could utter here]."

Big T: :::typing frantically into the nearest keyboard:::

Little T: "You're not tweeting that -- are you?!"

I won't bother delineating what follows. It's just ugly, we'll leave it at that.

And chances are good that my social media-tized lifestyle with its frequent unveiling of my progeny's out-loud thoughts to an unknown public won't have any more negative an impact on his mental health than the rest of what I've put him through in his first decade. At any rate, he can use his college fund for therapy, if he wants. I'm easy that way.

But then, I'm not tweeting and Facebook status-changing about the latest way anyone could cure their disease.

Thankfully, the FDA has been listening this month to testimony on the issues related to health care advertising in social media.

Emily P. Walker for MedPage Today writes about some of the potential scenarios that are a little scary if you spend enough time talking to health care consumers and know how they often think (or not.)

Like this: We've all become accustomed to the fine print that's rattled off at lightning speed like so much... whatever... about a drug's contraindications (risks), right?
That's the law. Pharma is required to let potential users know the downside to their wonder drugs.

No WAY can they accomplish that in 140 characters or less.

Or how about this: Your Aunt Ethel, who's been plagued by any given malady all her life, comes across a perfectly ethical, well-done YouTube video on a surefire treatment. Only thing is, Ethel, in her haste to share this incredibility on her own exciting YouTube Channel (to which you and all of your family are inexorably subscribed) inadvertently leaves off the end of the video where some kinda gory curative details happen.

Can unwitting (uninformed) patient-viewers turn around and sue the videotaped medical practitioner for not revealing the whole story of the cure, if Ethel's the one who botched the video?

According to Walker's articles (this is the second in her series) and the testimony (here with print & video on the FDA site), the response to these and similar worries by pharma and other big medical advertisers has been to shy away from social media.

But that's where we are... Stay tuned to see what the FDA has to say about what can, cannot, and most importantly, must be said to you Tweeps and FB'ers by the sellers of health care.

And I'll keep parading my son's burgeoning brain activity via keyboard. At least until he gets old enough to have his own Twitter account and starts slamming his mom by text.

UK Fertility Show Offers Plenty of Compassion Ops

Infertility pros from around the world descended upon London recently for what was apparently well-named The Fertility Show. I have to say, I got a kick out of reading Claudia Connell's 'undercover' piece from the MailOnline.

And naturally, some readers responded with hurt and angry feelings.

I didn't get the clear impression that Claudia was being insulting toward people who seek fertility treatment. Rather, it seemed that her main digs were square on the noses of the fertility industry, healthcare professionals whose lives are supported by offering (promoting?) the use of assisted reproductive technology.
 
She even took a few swipes at psychosocial support group, More to Life, which serves those who in the end are calling the baby chase quits. (Surely the beleaguered MTL'ers who commented on the article are familiar with the concept that 'bad' attention is still attention.)

According to her article, more than 80 exhibitors were present at London's Olympia hall, and some of them had traipsed over from the United States. Frankly, I find that funny -- as we waffle over here about whether or not everyone should have access to life-saving medical treatment, a small contingent of pros break free to go sell, I mean, offer life-making treatment to people with national health care.

My opinion: Claudia snarkily called out the industry with more humor than I could've mustered if I was in her 40-something no-child-yet shoes. Touché.
 

Conception Collaborators' Ears Should Ring With Voices of the Donor Egg Market

The DoubleX crowd is chewing up the question of whether or not donating your eggs is "smart" versus the stance that doing so equates to a woman selling her body.

I enjoyed reading the sentiments, but I think the proposed question is worded... awkwardly?

Granted, it's not much of a stretch to say that my DNA-carrying eggs are products of my body. It's reaching for a breaking point, though, when we label a woman's egg cells as "her body".

My whine might seem a tad moot, or at least uninteresting, but I think the repro med pros have to maintain a bit more than a passing curiosity about the perspectives of the women who are donating their eggs, some of whom are quoted in this XXfactor piece.

The Buddhist in me particularly likes the women's viewpoints on the related question of fertility hysteria and infertility treatment.

My favorite comment is from Samantha Henig, associate editor at DoubleX, who muses about the high-dollar offers beckoning to college co-eds with "just so" traits: "... I never thought about how insulting it would be to be told your eggs are worth less because you lack [those traits]. I think it's a sign of the desperation that infertility can spark, and how it can bring people to make these borderline-eugenic demands."

Well said. Are we listening?