Part A Scenario: Is It Acceptable to Edit the Genome of Human Embryos to Treat Genetic Diseases?

You are an elected official, and the scenario described below has been presented to you. You need to make an informed recommendation about what to do, but you do not have all the information you need. How do you get the information you need? In other words, what else do you need to know to make an informed decision?

There is a group of genetic disorders that cause fatal childhood diseases. To avoid having children with these genetic disorders, some parents choose to use a procedure called in vitro fertilization (IVF) followed by genetic testing (you have previously learned about chorionic villus sampling and amniocentesis). Typically, in the first step of IVF, women receive hormone injections to produce multiple eggs, after which the eggs are harvested. The eggs are then fertilized by sperm in a Petri dish to make embryos, which are then transferred to a woman's uterus. If the goal is to identify embryos that do not have specific genetic conditions, doctors would screen the embryos before they are implanted into the womanin other words, they would analyze the embryos' DNA to look for variants of the gene(s) that cause the genetic disorder. This screening is called pre-implantation genetic diagnosis, a topic discussed previously in this class. While the genetic testing of IVF-produced embryos has been done for decades, the procedure is controversial. The controversies include worries that parents are interfering with their potential child's traits, concerns about what happens to embryos that are not implanted, and the fact that these technologies are not available to everyone because they are expensive.

Now imagine that a group of parents is before you, and proposes to not only screen embryos, but also wants to go a step further. That is, they propose to use information obtained from screening the embryos to then identify and "repair" faulty genes in the embryos that are linked to a known genetic disorder. If the proposal is approved, it would be the first time anyone has tried to change genes in human embryos that are meant to be implanted into women and carried to birth. The parents argue that this procedure will decrease the number of children suffering from deadly genetic diseases.

At the same time, you are aware that there are many people who are strongly opposed to genetically modifying humans. These include many religious organizations, as well as different groups that advocate for patients or for people with disabilities.

In your role as an elected official, you want to prepare a list of questions about genome editing for non-medical "enhancement" and form a panel to discuss the issue.

Part B Scenario: Is the Use of Genome Editing for Non-medical "Enhancement" Acceptable?

Again, you are in the role of an elected official. You must make a decision on whether citizens should be allowed to use genome editing for enhancement purposes, as described in the scenario below. As you read the scenario, consider information you might need to be able to make an informed decision and who would be able to provide that information. For example, you may want viewpoints from experts on the medical, health, and environmental questions. You might have ethical questions best answered by a bioethicist (a person who thinks about the moral and ethical issues related to scientific advances), a philosopher or a religious leader. Do you want to hear from people directly affected, from experts, and/or from concerned neighbors and citizens?

Imagine a future where it is possible to modify a person's DNA to "improve" non-medical traitsin other words, the modification is not for the purpose of curing or preventing diseases. This sort of genetic "enhancements" could include improved muscle mass and the ability to move oxygen to one's muscles more efficiently - traits that are valuable to elite athletes. Other potential enhancements might include modifying genes to decrease the chance of needing glasses. And while scientists have not yet identified genes that are clearly related to intelligence, some people might hope that these genes, if they were ever found, could also be enhanced through genetic technologies.

Some groups might believe that, if people want, they should be able to "improve" their own DNA. They think the government should not have any say on why or how genome editing might be used. They believe it is a private matter of personal choice, like many other medical decisions.

Additionally, you are aware that there are many people who are strongly opposed to genetically modifying humans, in particular for non-medical traits. These include many religious organizations, as well as different groups that advocate for people with disability.