Tinder Swipes and Zebra Stripes: Navigating Romantic Relationship
I recently came across an article about a Harvard scientist who is developing a “DNA-based” dating technology. This technology, which the scientist refers to as a “genetic matchmaking tool,” can be embedded within dating applications with the intention of reducing the prevalence of genetic diseases.
To join, a member would submit his or her saliva to a lab to be analyzed for various inheritable conditions. This information would then be connected to the user’s profile. However, no one, not even the user, would be privy to the results.
This technology would ensure that individuals who have or carry the same genetic condition would never match on the dating app, thereby preventing the possibility of an intimate relationship that could result in a child with a serious genetic disorder.
While this proposed dating tool obviously poses many ethical dilemmas, it opens the door to an important discussion of the issues and challenges facing young adults in the rare disease community, particularly romantic relationships and family planning.
Most people who are affected by rare, genetic conditions, including myself, face difficulties when it comes to dating and contemplating having children. I’m a carrier of a rare, x-linked disease called Adrenoleukodystrophy (ALD). Since the disease is x-linked, males who inherit the gene face serious or even life-threatening symptoms, while females are often affected later in life and not as severely. Due to the inheritance pattern of the disease, females have a 50% chance of passing the disease to their offspring, regardless of the genetics of their romantic partner.
For many years, carriers of x-linked diseases did not have many options available to ensure that their future children would be healthy. If they wanted to start a family, they either had to risk having their child inherit the genetic condition or adopt. Thankfully, today there are other options, including using a donor egg, chorionic villus sampling/amniocentesis (prenatal genetic testing), or the method I plan on pursuing if I choose to have children one day: in vitro fertilization with preimplantation genetic testing (IVF with PGT, formerly known as PGD).
There are, however, a few dilemmas when considering IVF with PGT. First, the procedure is incredibly costly, currently ranging from $16,000 to $28,000. Unfortunately, most states only require insurance companies to cover infertile couples pursuing IVF, and not women who carry serious genetic diseases. On top of that, since PGT is still considered controversial, it is rarely ever covered.
Second, IVF with PGT is not guaranteed to result in pregnancy. In addition, women often have to endure (and pay for) multiple cycles before becoming pregnant. And no, there is no refund policy.
Third, IVF requires substantial preparation including daily subcutaneous medications and intramuscular injections which may cause significant side effects.
On top of that, many women who consider alternative reproduction fear the harsh judgments of others. There are people who believe that IVF with PGT is unnatural, or defies the will of God, and do not hesitate to voice their opinions.
At the end of the day, being a carrier of a genetic disease makes navigating romantic relationships and family planning all the more difficult, especially as a young adult. Still, though, I don’t think “DNA-based” dating is the way to go. Being a carrier of ALD is part of my identity, but it doesn’t define me or make me any less deserving of a meaningful romantic relationship.
Taylor Kane is the founder and president of Remember the Girls, an international non-profit organization that unites, educates and empowers female carriers of x-linked genetic disorders--a group that is underrepresented and often overlooked by the medical profession. Taylor’s activism began as a pre-teen, shortly after her father died from the rare x-linked recessive disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of the disease. Not only did she help raise more than $250,000 for ALD research, but she successfully lobbied the New Jersey legislature and governor to enact a law requiring the screening of newborns for ALD, as the disease can only be cured if treated before symptoms develop. In 2012, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in implementing positive change through advocacy, social media and the legislative process. A recent summa cum laude graduate of The George Washington University, Taylor is an award-winning activist, an accomplished speaker and author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.