Should Genetic Testing Be mandatory?

Should Genetic Testing Be mandatory? Leah Friedman

Background on Topic • Since the Human Genome Project wrapped up in the 1990s genetic testing for embryos and fetuses has become widely accessible. Testing of embryos during in vitro fertilization or performing an amniocentesis, drawing amniotic fluid from a pregnant woman, will help determine whether or not the baby will be born with downs syndrome or has a marker for breast cancer. There are many different genetic tests available to help the parents determine whether or not they wish to proceed with the pregnancy or terminate it. Many say that by testing the embryo or fetus before birth to determine birth defects should be mandatory. This issue is becoming even more relevant as science improves. • Purpose of Survey • The purpose of this survey was to see how much the general population of students know about embryonic testing and how relevant it is becoming. With new medical changes being proposed in the government, some are looking make testing of an embryo or fetus during pregnancy mandatory. There are many risks to forcing women into testing. This survey pooled men and women to see their reactions to these proposed changes. • Survey Methods • The method I used to survey the population was a survey of convenience for a survey created through Survey Monkey. I emailed ten classmates who were given the option to take my survey. I got eight responses to the survey. Six females, two males. Overview

Survey Results

How much do you know about mandatory genetic testing? • This question was an introductory question to simply find out how much the subjects I was surveying, knew about mandatory genetic tests, an issue that has been specifically associated with pregnancy. From my results I found out that there is at least one person who knows a lot on the subject and has probably researched it, and is familiar with it. There is another person who probably knows most basics and the rest have heard of it. This tells me that I will get many different perspectives on this controversial issue. The fact that no one had heard nothing about it, helps get accurate data from my survey. • Discussion • Results How much do you know? Findings

Which of the following genetic tests do you think are acceptable? • This question was meant to poll people’s personal opinions on which genetic tests are acceptable in general. Every person who answered my survey believed that both tests are acceptable. An amniocentesis which is performed during pregnancy and pre-implantation testing of embryos are two types of genetic tests that can aide parents in making a decision about termination. The tests in general just look for abnormalities and every person believe that they are acceptable tests. • Discussion Acceptable Genetic Tests Findings

For each of the following tests, check the box which determines how much you think a test should be enforced. Check all that apply. • For each test presented the surveyors were asked to determine how much they believed that test should be enforced. Every person unanimously determined that an amniocentesis and embryo testing should be optional and a woman shouldn’t be forced to undergo tests if she doesn’t want them. Most people don’t like being forced into potentially dangerous tests and these results agree with that. For post-birth genetic tests 12.5% of classmates believed that testing for genetic issues after birth should be mandatory as 87.5% believed that these tests should also be optional. This confirms that this issue is controversial as there is a split in opinions but also that some people believe that testing a baby after they are born can prevent future problems. • Discussion • Results Genetic test enforcement Findings

If you or someone you knew were pregnant, would you advise either an amniocentesis or testing of the embryo, if relevant. Please explain. • I have received many different responses to my question of whether they themselves would undergo embryonic or pre-natal genetic testing or advise a friend of it. The answers were very diverse with some people saying yes without a doubt, some saying yes if there is a potential risk to the child to not have it, or some split. Most people agreed that it should be up to the mother to decide whether or not she wished to undergo testing even if they wouldn’t advise it for themselves. One person even said that they didn’t know what they would do in this situation, but that is alright as this is a very difficult topic to discuss. Some people will never know. Everyone had a different opinion with consistent themes. • Discussion • Yes. I would want to know, even though I would not act any differently based on the results. • I would only advise them if they believed that the child in question was at risk for a certain disease or condition. • I don't know. • Ideally, I believe everyone should be tested, but ultimately, it is their body and child so it is up to them. • Yes because it could possibly save her and her child's life • No, I think the option should be available if people want to but it's not something I would advise • Yes, to make sure the child doesn't have any serious conditions • Responses Open Ended

If a woman has a fertilized embryo ready to be implanted, she has the option to have the embryo undergo genetic tests to rule out any abnormalities before implanting it. A pregnant woman is given the option to undergo an amniocentesis, withdrawing amniotic fluid from her uterus in order for the baby to have a genetic test performed. Do you believe that these women who have been given a choice in the past, should now be required to undergo genetic testing? • Women in the past have always been allowed to choose whether or not to have genetic testing but I asked the people who I surveyed whether they thought that it should be mandatory to undergo genetic testing. I received results that, 75% of the population thought that it should not be mandatory and in essence women should still have the right to choose. One person thought that it would be better if women were required to undergo genetic testing all together. The last person recognized the sensitivity of this issue and declined to comment on the results. In general this fits the idea that women should not be forced into any genetic testing that could potentially harm them or their child. • Discussion • Results Should women be given a choice? Findings

What is Your Gender? • As this is a topic that pertains mostly to females, I was curious what genders responded to my survey. I had two males and six females. The answers were pretty much undistinguishable between males and females but if I had had more males answer my survey I would have had a more accurate representation of how males feel about genetic testing versus males. For females this could be an issue that they personally experience in the future, whereas males will not experience it with their own bodies. I found it curious that I even managed to get males to answer my survey. • Discussion • Results How much do you know? Findings

Testing Genes to Alter DNA • Cycle of Genetics • Summary • Overall I found from my survey that people recognize the issue of genetic testing and agree that the government should not have a say. Requiring women to test their embryos opens up a whole new controversy for “designer babies” because they will be able to change genes in a way that suits their needs. Doing an amniocentesis allows women to see whether or not their child has downs syndrome and allows them a late term abortion. This topic has become very controversial but my findings have confirmed that most people regardless of gender, believe that it should not be mandatory and women should be able to choose whether or not to undergo genetic testing before the birth of the child. Summary

Should Genetic Testing Be mandatory?