Tag Archives: Bioethics

Frozen Sperm & the Slippery Idea of Increased Risk

21 Aug

Hanging bodies(Image by Gillie Rhodes used under CC 2.0 via)
 
As long as people do not want to have children, or certain types of children, they will search for a way to avoid it. In a recent CNN report on reasons why a small but growing number young men have been freezing their sperm, achondroplasia was listed as one of the conditions the risk for which is associated with advanced paternal age. While the report cites single studies finding an increased risk for various conditions and disorders, many studies over the past two decades have linked achondroplasia to advanced paternal age. (Perhaps Mick Jagger should educate himself, if he hasn’t already.)

Most people with achondroplastic dwarfism are born to non-achondroplastic parents like mine. (“Are you parents little, too?” is one of the most common questions I get from strangers.) Most of us grew up told that our genetic mutation could not be traced to any known source. That is now changing, as news networks repeat the link to advanced paternal age.

My father was 28-years-old when I was born, hardly what we in the West think of when we envision advanced paternal age. All but one of my friends with achondroplasia have parents that were roughly the same age as my own when they were born: that is, late 20s or early 30s. And the majority of my friends with achondroplasia are first-borns.

Anecdotal evidence is often rife with bias, so I cannot officially dispute the researchers’ findings. Perhaps my friends and I are simply exceptions to the rule just like every smoker can name someone who beat the odds and puffed their way to age 95. But my personal experience easily invalidates any argument that men who freeze their sperm in their 20s or 30s are on a clear path to avoiding fathering a child with achondroplasia.

Bioethicists are divided on whether or not to advise men to freeze their sperm to avoid various conditions. Regardless of the answer, men should hear that the statistics on achondroplasia and age risk imbuing them with an inflated sense of control. One could say most forms of genetic counseling do.    

 

 

Would You Give Up A Disabled Baby, And If So, Why?

10 Aug

Youri(Image by Naoya Fujii used under CC 2.0 via)

 

Tonight 60 Minutes will feature the very first interview with the Australian couple that has attracted international scorn ever since the Thai woman they hired to be their surrogate mother publicly accused them of adopting one of the twins she gave birth to while refusing Baby Gammy, the one with Down Syndrome. Hiring a surrogate mother who lives abroad is both legal and unregulated in Australia, with none of the criminal background checks or counseling that are required for domestic surrogacy arrangements.

The Digital Age has seen the rise of prospective parents independently seeking out surrogate mothers online without any oversight, as well as a rise in “re-homing,” wherein adoptive parents join Facebook or Yahoo groups to seek out new parents for a child they’ve decided is harder to handle than they had thought. A disturbing Reuters report last fall profiled a couple who handed over a girl with medical problems they had adopted from Liberia to a new family they had found online, only to later discover that the new parents were known sex offenders.

Yet while black market adoption may be on the rise thanks to the Internet, the history of people rejecting only certain kinds of children is depressingly long. Only 2% of all babies born are disabled, yet half of the children up for adoption in the United States are disabled. Half of them are also black. Chad Goller-Sojourner told NPR this year that prior to his adoption by a white family, he was passed over by more than one black couple for being “too dark.”

I am deeply grateful that my parents did not put me up for adoption, like so many parents of dwarfs before them. Being rejected by your own parents simply for your body feels like a rejection of your very life. But I will not start chanting that parents should never ever make adoption plans for their children until we admit that not everyone is capable of being the sort of parent certain children need. The skills required for accepting your child’s skin color or body shape are not the same skills required for accepting a lifetime of waiver agreements about the deadly risks of invasive surgery. In the real world, some marriages do break down and some parents do become abusive and some parents do murder their half-grown children when they try and fail to cope with their child’s disability. I know a good number of people who are great at working independently but terrible at caregiving. In Far From the Tree, Andrew Solomon profiles a British woman who eventually relinquished custody of her severely disabled daughter to a foster mother, telling the NHS, “I’m not the right mother for this child.” Such honest humility requires some degree of bravery and, as Solomon points out, honors the skills of the foster mother and all parents who keep their commitments to disabled children.

Do some parents give up too easily? Absolutely. But are some children better off far away from their parents? Evidently. Because no two parents are alike, what is best for the child is best decided on a case-by-case basis. The Australian case sounds dreadful, but I’m withholding judgment until the parents have had their say. And as long as there is reproduction, there will always be parents who put their children up for adoption or terminate pregnancies, and society must thus ensure that the means for doing so are absolutely safe and heavily regulated.

But we cannot deny that too many parents end up failing to support certain kinds of children because the society they live in fails to support such kinds of people. Parents can usually see through the B.S. of those who urge them to stand by their kids no matter what and who also regularly make disparaging remarks about scars, fat, or dark skin, and openly wince at the idea of looking like a freak, a wimp, or a pussy. We won’t ever lower the disturbing number of prospective parents who would reject a child with an extra finger or toe until we as a society confront what would cause a parent to think that having an extra finger or toe is too horrific to endure.

During a discussion in college about the individual’s right to make their own medical decisions, I was shocked to hear a bunch of my friends insist that they would rather die than lose the ability to walk. Is it possible to attach such extreme shame to a hypothetical situation for yourself without attaching shame to the situation of others who live that way every day?

When I told one of my fiftysomething mentors about how upset I was by the incident, she smiled and said, “Well, that’s something young people are certainly more likely to say than anyone else.”

A fortysomething friend piped up, “Yeah, that is a very young person thing to say. I swore when I was young that I’d shoot myself if I ever went bald and yet here we are!”

Indeed, while the strains of physical pain and special accommodations and repeated doctor’s appointments are very real, perfection is not. And no matter how far technology advances, the belief that we can guarantee ourselves “normal” children is delusional. After all, unlike Baby Gammy and I, 85% of all disabled people were not born disabled. That’s something to bear in mind when heading to the obstetrician’s or the adoption agency.