Ethical Considerations: Do we still have it in us?
Ethics is full of thought experiments in which individuals discuss a specific situation and try to determine what is the “right” thing to do or not do. One of the most famous thought experiments is the trolley problem. In the trolley problem, a trolley is uncontrollably going down the track, and a few men are standing in its path. On the other track, there is one man. You are asked if you would switch the trolley’s path to go down the track with the one man instead of the track with the few men. There are many variations of the problem, and you can find out more here: (https://www.theatlantic.com/technology/archive/2015/10/trolley-problem-history-psychology-morality-driverless-cars/409732/.
Thought experiments are a way for our minds to actively engage with a potential problem. In this article, let’s consider a thought experiment of what the future may look like if genetic testing of individuals becomes more commonplace and how that may impact reproductive options and rights.
It is the year 2025, a dating app offers the option to upload your carrier screening results to your profile. The app already allows for your preferences for religion, lifestyle habits, and education level, so adding the preference of "not being a carrier of the same conditions you are" is an easy addition to the qualifications you set for your future mate. If you’d like to learn more about carrier screening, please check out our informational page on it.
The other dating apps find this to be an excellent idea and offer you to upload your carrier screening results as well in addition to your ancestry profile to their apps. This information becomes easily accessible to those on the app and the app developers. Public health organizations get wind of this and decide they would want to help avoid carriers getting matched up, so they invest in these dating apps. At first, it was optional to upload your genetic information, but as time goes on, the app developers and public health organizations feel it is too risky for carriers to match up and require this information up front. With this requirement in dating apps, the health organizations are able to ensure carriers are only matched up on having similar interests, not similar mutations.
Dor Yeshorim is an organization in the Jewish community in which prospective couples check to see if they are carriers of the same conditions before courtship. There are some conditions in the Jewish population that historically are more common than in the general population such as Tay Sachs or Gaucher Disease; therefore, the community established this organization to attempt to limit these conditions.
Since this organization has been established for many years, it is not a far-fetched idea to extend this idea to the general population, especially because any couple could be carriers of the same condition regardless of their ancestry. In this society, it it agreed that it makes sense to avoid ever dating someone who is a carrier of the same condition. It can be difficult when you want to have children with your partner, knowing there is a 25% chance each of your children could have a genetic condition.
There are reproductive options such as taking the 25% chance each pregnancy conceived, conceiving a pregnancy and using prenatal diagnosis, choosing in-vitro fertilization (IVF) with preimplantation genetic testing (PGT), or using donor eggs/sperm. These options can have high emotional and financial costs, so the general population believes it is best to avoid this situation altogether.
Apps don’t always guarantee finding a mate, so many people stop using them and go back to conventional ways of finding love. Someone will likely find love in other places, like at work or the park. The screening process of carrier status is not performed in these situations, so there is no way of knowing if the person you meet is a carrier of the same condition. Society and the government realize this, so they develop “The Public Health Carrier Inventory”. Everyone’s carrier screening results are housed in the databases. The Public Health Carrier Inventory collected this data mostly from the profiles people made on the dating apps as well as medical records.
Imagine a couple that met outside of the dating app and decided they would like to conceive a pregnancy. The female partner goes to her OB/GYN to prepare for her first pregnancy only to find out that her partner is a carrier of the same condition. By this point, The Public Health Carrier Inventory and society no longer allows a couple, who are both carriers of the same condition, to conceive a pregnancy spontaneously.
The woman is told she has plenty of options in this situation. The easiest is to break up with her love and to be matched with someone who isn’t a carrier of the same condition. If that does not work and she wants to have a baby with this mate, then they have to either use IVF with PGT or a donor egg/sperm. One of them will then need to be sterilized, so a spontaneous pregnancy is not conceived. Otherwise, if they do conceive spontaneously, regardless if the baby has the condition, they will be jailed and their baby taken away from them for being “irresponsible” parents.
In this scenario, the innocent act of uploading carrier screening reports to a dating app has turned into outright control over someone’s reproductive freedom.
Maybe this scenario is a little too far fetched and not ever likely to occur. The point of this thought experiment is to remind us that there have been times in the past where there was genetic discrimination, and there may be a time in the future in which we are teetering on this same kind of discrimination. It is important we advance in genetic testing and technologies but with constant investigation on the social impact these innovations have.
* This blog constitutes general information about genetic testing and medical screening. This blog does not offer or provide medical advice or diagnosis, and nothing in this blog should be construed as medical advice or diagnosis. Do not rely on the information in this blog/article to make medical management decisions. Please consult with a medical professional before making those decisions. Do not delay in seeking professional medical advice if you think you have a medical concern. Do not disregard professional medical advice based on any information received in this blog.
