Designer Genes

ADHD, dyslexia, and selecting "perfect donors"

Posted Jan 21, 2016

Diane Tober
Source: Diane Tober

The London Sperm Bank recently came under public scrutiny for rejecting a prospective sperm donor because he’s dyslexic. Aside from dyslexia, this repository also screens out men seeking to donate sperm if they have ADHD, dyspraxia, Asperger’s and other neurological conditions, many of which have a demonstrated genetic link.  On the company’s website, these traits were listed as “neurological diseases,” along with Cerebral Palsy, Parkinson’s, Alzheimer’s, Epilepsy, Tourette Syndrome and Multiple Sclerosis.

This revelation sparked response from the autism and dyslexic communities. Core issues include the eugenic implications of donor selection, as well as the way in which these traits are portrayed as “disease.” While such characteristics present certain challenges, there are also benefits.

The problem is not that sperm banks screen for genetic diseases.  Those in the business of selling human gametes have a responsibility to ensure donor health, as a potential child’s life depends on it.  A sperm donor who passed on a genetic heart disease to children conceived from his sperm is a reminder of what can happen when screening isn’t thorough enough.

The problem is how learning differences are defined as disease and stigmatized. We need a dramatic shift in how we think about different modes of learning, thinking and being in the world. The London Sperm Bank made the mistake of both inaccurately describing these differences as “disease” and posting a discriminatory policy directly on their website; even if the language is removed, the policy is undoubtedly unchanged.

Screening policies in the human gamete industry reflect larger cultural assumptions that pathologize difference. In my research on both sperm donation in the 1990s up to my current work on egg donation, I have discovered there are a number of reasons a prospective sperm or egg provider may be rejected: too short, too tall, overweight “socially inappropriate,” not having the “right motivations,” not attractive enough, a variety of “health reasons,” possibly even religion or ethnicity, and so on. The reasons for rejecting a potential donor are often unspoken.

The eugenic implications are certainly troubling. However, though a crude analogy, it is impossible to force a business that sells Dolce and Gabana or Chanel to carry Walmart brand, if their customers won’t buy these products. Many agencies and repositories appeal to clients in the market for “designer genes,” or even narrow definitions of “health.” If they have donors that no one wants, they’re going to have products sitting around in their tanks collecting the ice sickle version of dust.

In the US, especially, sperm and eggs are products that are assigned different monetary value based upon “desirable” traits: attractive, athletic, talented, college educated gamete providers are typically more popular than donors with any kind of known anomaly. 

For my earlier work, I conducted fieldwork in several sperm banks with different philosophical missions and different client bases. The now-defunct Repository for Germinal Choice sought to only recruit the “best and brightest men to be sperm donors.” Their clients were restricted to wealthy married couples who met the repository’s criteria for “high intelligence.” The exclusively blond-haired, blue-eyed portraits of donor-conceived children that decorated their office walls harked back to a sinister time in human history.

The Sperm Bank of California was the first to provide identity-release sperm and offer services to single women and lesbian couples. The Rainbow Flag Health Services’ mission was to build the lesbian-gay community through sperm donation, recruiting only gay men as donors.  These repositories all had policies guiding who could and could not be sperm donors based upon both the founders’ mission, as well as their client base.

Consumer demands can be fickle. In my earlier research on single women and lesbian couples choosing donor sperm, I was interested in how women selected donors when they were not trying to match a male partner. I heard things like:

I wanted someone tall. She wanted someone athletic. We both wanted someone bright. We finally chose a donor who was a medical student, played basketball, and drank coffee...because neither one of us can relate to someone who doesn’t drink coffee.

Are there genetic predispositions to coffee drinking? Highly unlikely.

I referred to this kind of donor selection process as grass roots eugenics—where people select donors based upon fuzzy interpretations of genetics, imagining a prototype perfect donor whose desired traits will be passed down to their child. People choose donors with whom they feel they have a connection. If they plan to tell the child how they were conceived, they also want to be able to say good things about the donor who helped create them.

When people spend years enduring unsuccessful infertility treatments, are struggling to become parents, and finally turn to gamete donation, they feel a complete loss of control and mourn for the genetic child they will never have. It is understandable that when faced with using a sperm or egg donor to create their families, intended parents want to regain a semblance of control, or find a "better" version of themselves, to give their future child "the best possible chance in life." Most, however, do not understand how genetic inheritance works. Are there eugenic implications? Yes.  How do we juggle one's right to choose the donor who will be the genetic parent of their child vs. larger social concerns surrounding various forms genetic engineering?

The financial ranking of prospective donors based on race, perceived intelligence, and other factors is of concern. But I'm not sure the gamete industry can be regulated to remove the troubling aspects of unnatural selection without taking away intended parents' abilities to choose their donors. In Spain, physicians choose the donors for their patients based on how closely they resemble one another, agencies do not exist, and you don't have the kind of market-driven donor selection that you have in the US.

For my upcoming documentary film, The Perfect Donor, as well as for my research on egg donors’ decisions and experiences, I spoke to genetics counselor Amy Vance:

Intended parents would prefer to have an egg donor with a family history of cancer, than a donor with a history of ADHD. She explains.

“Why?” I ask, a bit perplexed.

Because intended parents think there will be a cure for cancer by the time their child is old enough to potentially get it, but ADHD and dyslexia affect the parenting experience...They don’t want to have to parent a child with these disorders because it will make life and school more difficult.

Hmmm....I sat there pondering the multiple layers of assumptions contained in that one statement.

“ADHD is a huge ‘red flag,’” she continues.

It struck me how little people understand about these traits that are commonly thought of as disorders, disabilities, and diseases. As someone who ranks pretty high on all the ADHD scales myself, I have to admit I felt a pang of rejection. I wanted to explain the value of people with ADHD, Dyslexia, and similar differences.

We need to dramatically rethink ADHD and Dyslexia, as well as increase awareness about both the benefits and challenges of these traits. First, ADHDAttention Deficit Hyperactivity Disorder—is a grossly inaccurate term. There are many highly gifted people who possess characteristics associated with ADHD. A more fitting expression might be “Creative Surplus Energy Traits” (CSET). Here’s why:

  • People who have ADHD characteristics may find it excruciatingly difficult to focus on boring tasks. On the other hand, we hyper-focus on things we’re passionate about. Passion for our work drives our energy to new, creative heights. We have surplus energy to put into our work, hobbies, and families.
  • Many of us have chronically messy, disorganized desks and spaces. For me, in order to write, I have to be surrounded my multiple piles of different articles. It helps me connect my thoughts and make them tangible--enhancing creative energy.
  • We are not “linear thinkers”; we are visual learners. I have personally entered an internal state of panic when a boss requested that I write up a systematic list or plan.  My brain doesn’t work that way. But, we are good at seeing the big picture, making connections that a linear thinker wouldn’t see, and moving from thought to action (what some might call “impulsive”). Extra creative energy and passion means we get things done when others might give up.
  • We have a difficult time sitting in cubicles, at desks, and not blurting out random thoughts in meetings—especially when someone else is talking—but get us out in the field moving and doing things and we shine.
  • Many dyslexics are also “diagnosed” with ADHD—with the added difference of having reading challenges that can be overcome with different learning strategies. Dyslexic people are also known to be highly visually creative and innovative.

As ADHD researchers Hinshaw and Scheffler address in their book, there is an explosion of ADHD diagnoses. With these traits so common, why is there still so much stigma? Perhaps it's the stigma, itself, along with the rigid structures of education, work, and societal systems that turn human variation into "disorder" and "disability"?

If the span of my arms is the timeline of human evolution, the amount of time humans have been sitting still in our desks is perhaps the tip of my fingernail. As an anthropologist, I see there are definite evolutionary advantages to possessing these traits, to being on the move. They become a “disability” when forced to slow down and conform to ways of thinking and being that don’t come naturally, This is like getting angry at a Thoroughbred racehorse because it's not good at pulling a plow. People with ADHD, dyslexia, and other neurological differences, often become entrepreneurs out of necessity--to survive--at our own pace.

Drs. Brock and Fernette Eide's book and organization address the advantages of dyslexia and Dr. Dale Archer discusses how the challenges of ADHD are actually gifts. Their respective work mentions how the “neuro-diverse community” includes the Einsteins, Mozarts and DaVincis of the world, as well as today’s entrepreneurs like Steve Jobs and Richard Branson of Virgin Air. MIT is known as a haven for dyslexics.

We need to examine the underlying cultural assumptions surrounding genetics, human variation, and neuro-diversity. We need broader discussions about the ethical implications of how donors are screened and selected across audiences. We also need to dramatically shift the conversation surrounding learning differences—such as ADHD, Dyslexia, Dyspraxia, and similar characteristics—and provide a space for those who experience these traits to educate others. 

I am not advocating increasing the number of gamete donors with ADHD and dyslexia per se (and egg donation is certainly more complicated than sperm donation). But to reject donors with these traits reflects deep social stigmas surrounding learning differences. With increased awareness of these traits, and the gifts ADHD and Dyslexia offer, we might—for better or worse—see neuro-diverse donors in high demand.