So-called recreational genetic testing that provides information about non-clinical traits is often dismissed as harmless. Maybe that’s so. But there is a worrisome potential to any test when technology, artificial intelligence, marketing, and medicine become increasingly intertwined with our personal lives. The mini-play below is a tragedy lurking around the edges of a comedy.
Parental Warning: Some readers may find parts of this posting to be offensive. On the other hand, one of the roles of dark humor is to shock us into ethical recognition.
Setting: The living room of a married couple who are planning to start a family and desire genetic counseling after learning the results of their ReProfile test, a (fictitious) direct-to-consumer genomics test panel aimed at providing genetic information to prospective parents prior to conceiving a baby.
Jeanoma [J], a Virtual Personal Genetic Counseling Assistant
W: Jeanoma, On! Please pull up our ReProfile results. We received them last night and now we want to discuss them with you.
J: This conversation may be recorded for quality assurance and marketing purposes. Hello, Wife and Husband. I have your ReProfile Basic® test results right here. What are your questions and how can I best address them for you? And are you interested in the ReProfile Expanded test®? It covers more traits than the ReProfile Basic®test. I can upgrade you now, if you’d like, at our Preferred Customer discount price.
H: Jeanoma, no upgrade for now, thank you. We are planning on having children soon so we took that saliva test to have as much genetic information as possible. We want to make the most informed pregnancy plans, have healthy children, and manage our hereditary risks in a rational way that reflects our beliefs and values.
W: Jeanoma, wine is a very important part of our lives. We are dedicated red wine drinkers, as were our families. Of course, I know better than to drink it when I become pregnant. But we have wine with dinner almost every night. We belong to wine clubs. We regularly visit wineries for tastings. We have taken continuing education classes on oenology. Sommeliers sometimes ask us for recommendations. We met at a tasting for 2012 Willamette Valley Pinot Noirs. As I am sure you know, pinot noirs are particularly sensitive to soil characteristics. We think that the unique terroir of the Willamette Valley AVA produces a wine that sometimes put Burgundies to shame. So you can imagine our shock when we learned from our ReProfile test that we might be at risk of having a child who will like only white wine…….champagne for celebrations, sure, okay, we get that, but…..chardonnay, so oaked, or so… bland (Represses a tear). As we understand it, multiple genes determine wine preferences. The two of us have mostly Red Wine genes, but we each have some recessive White Wine genes and our children have a 38% chance of inheriting enough White Wine genes that they would be white wine drinkers. That risk is so high!
H: Nods in agreement, reaches for his wife’s hand. She pulls it away and turns her head to look out the window.
J: These genes code for a molecule called oenorin, a taste receptor that influences your wine preference. Different versions of these genes, called alleles, correspond to red and white wine preferences.These different alleles are named rouge and blanc. We stock an exclusive selection of small batch release Oregon Pinot Noirs that I can have on your doorstep tomorrow, if you’d like.
H: Jeanoma, so that means that our taste preferences are determined by our genes…..Let me think about that pinot order for a bit.
J: Let me be clear – genes don’t determine our fate. There is a lot of variability in our palate profiles related to our upbringing and environment that influence the ways that our genes are expressed. It must be hard on the two of you to adapt to this new information. What are your feelings about these test results?
W: Jeanoma, we know that we could cope with any issues and problems our kids might have. I am sure that we will love them no matter what. We are not bad people. We know plenty of white wine drinkers who seem content. But why not use the latest technology to help avoid those problems?
J: It looks like this is a very important issue for your reproductive plans. Tell me more about your wine experiences with your families when you were growing up. I can also order the Family Ancestry Test® to further explore your genetic heritage. If you agree to donate your DNA to our Product Development Research Lab you receive a 10% discount.
W: Jeanoma, I felt just terrible for my older sister. We all love her to death. But she didn’t have the Red Wine genes. She was left out of family conversations at supper, stayed home during family outings to wineries. My other siblings teased her mercilessly. She would storm away from the dinner table in tears, her glass of cab untouched or secretly fed to our dogs Rosso and Barolo. She spent many nights locked in her bedroom where I know she was surreptitiously sipping an overly sweet Riesling. My parents wound up yelling at us, and eventually at one other. My mother always blamed the White Wine genes on my father’s family. She would drop the sarcasm bomb – “What does your family know about wine? They’re from North Dakota.” It tore my family apart and my parents eventually divorced. I promised myself that my own family would never be like that. That was why we took that genetic test – to help avoid a broken family. Now, I wish I never had that stupid test. It only upset me and made me anxious. And thanks but no Family Ancestry Test® for now.
H: Jeanoma, I was an only child, so I never had a sib that I could share my wine experiences with. I wanted something different when I had my own children. I wanted to have four kids who would bond over their pleasure in red wine.
W: Four kids? You never said anything to me about wanting four kids.
H (Shrugs his shoulders): I thought you knew that I’ve always wanted a big family.
J: It sounds like you two need to have some important conversations. Have you thought about seeing a marriage counselor? I can set up an appointment if you would like. Or I can order the three best-selling marriage improvement books from our bookstore and download them on to your e-readers.
H and W (in unison): Jeanoma, uh, that kind of counseling is not for us. We can handle our own problems ourselves.
W: Jeanoma, right now we don’t feel like reading about our problems either. We want to talk about them.
H: Jeanoma, what do you think we should do?
J: I can’t tell you what to do. Only you two know what’s best for you. But there are a couple of options that might help you. Some of these are very sensitive and you may initially think they are not for you. But you should give each one serious consideration. Challenges sometimes force us to question and change our beliefs.
Some couples in your position just do nothin, choose to roll the reproductive dice, and see what turns up. I can order a set of casino quality deluxe dice for you and have them delivered in two hours to your roof deck with our Drone Delivery System®. Other couples decide to use a genetically screened sperm or egg donor. I can arrange a contract with a donor from Eugene/Eugenia®, our proprietary donor list, if you’d like.
H: Jeanoma, you mean use another man’s sperm to get my wife pregnant or have another woman’s egg in my wife’s womb? No way! And rolling the dice is not an option. We had this testing so we would not have to leave child-making to Lady Luck.
J: Yes, it is difficult to consider, but I urge you to keep an open mind. Another option is preimplantation genetic diagnosis, or PGD.
W: Jeanoma, is that some kind of test tube baby or something? One of my friends did that.
J: PGD is a special type of test tube baby. You would undergo in vitro fertilization outside of the womb, using your own egg and sperm. The fertilized eggs would be tested for their wine preference profiles. Only Red Wine Profile fetuses would be implanted into your uterus. I can set up an appointment with our Accessorize Your Baby fertility clinic for later this week so you can learn more about this option.
H: Jeanoma, that sounds like it would be expensive. Is it covered by insurance?
J: It is expensive. Some insurers cover all or part of it. Other people choose to have prenatal diagnosis, like amniocentesis or chorionic villus sampling, and then make a decision about whether to continue a pregnancy based on its genetic profile. Other people would not terminate the pregnancy but use that time before birth to adapt to the idea of having a differently wine-enabled child. This way when the baby is born, the parents are well prepared. But I have to advise you that these tests carry a small risk of miscarriage. Would you like to purchase miscarriage insurance? It is much cheaper if you buy it before you become pregnant.
W: Jeanoma, I might consider prenatal diagnosis. I don’t believe in terminating a pregnancy, but I might like to have the emotional preparation. That could be helpful for us, even if there is risk of losing the pregnancy from the testing. Knowledge is power. I would know not to drink red wine before breast-feeding because a White Wine Child might reject my breast milk. I could read about it on the Internet and join online support groups for parents who are attempting to raise White Wine Children or Trans-Wine Children who like both red and white wines. If it’s a girl, we could name her Rosè!
H: Jeanoma, what about this CRISPR thing I’ve read so much about on the Internet?
J: CRISPR is a technology that can alter the DNA sequences of the embryo before it is implanted, to correct any gene mutations. Think of it as a genetic nip and tuck. However, I have to warn you that this is a controversial new approach. Would you like to sign up for Jeanoma Inc.’s CRISPR Helix Adjustment Program®?
W: Jeanoma, I think it could help us solve our problem if it works. And it avoids a lot of the uncomfortable ethical issues of prenatal diagnosis. I am sure we can figure out how to pay for it, no matter what the cost. This is a priority for us. Maybe you can get that appointment set up for us.
J: I can do that. But let me first bring up something else. The ReProfile Basic results of Wife indicate that Wife is at a higher risk of developing breast cancer. What are your thoughts about that, Wife? Would you like me set up an appointment for a mastectomy? Would you like to purchase breast insurance?
W: Jeanoma, oh, that doesn’t worry me. I exercise a lot, I have a very healthy diet, I will be very good about my mammograms, and I only have one or two relatives with breast cancer and they were both smokers, so I think I am not at such a high risk. Besides, all the breast cancer is in my father’s family. He certainly can’t give me any breast cancer genes. And I look just like my mother and there’s no cancer in her family.
J: Okay, can I do anything else for you today?
H: Jeanoma, yes, please do order that case of Oregon Pinots.
W: Jeanoma, Off!
J: Goodbye Wife. Goodbye Husband.
Thanks to Emily Singh for help with graphics