The questions are arranged in three sections: Organ Transplantation/Donation, Genetics Testing/IVF, and “Designer Babies.” They are designed to raise key ethical issues, provide important information on the science, and help you get in touch with your own moral compass. With a nod to the realities of many women’s lives, we have written them in such a way that you can participate in the discussion even if you haven’t read the books.
We suggest you read through the questions and select 5-10 for discussion purposes. The last question is the ACTION CONNECTION QUESTION which ties all the issues raised into a relevant policy consideration. After your discussion, we encourage all readers to check out the Policy Questions section of the website for more detailed information on the science, ethical frameworks to consider these issues, and policy options.
Download a printer-friendly copy of the Discussion Questions for My Sister's Keeper (.pdf format requires Adobe Reader—download a free copy)
Bioethics Book Club Discussion Questions
Bioethical Issue: Organ Transplantation/Donation—
• My Sister’s Keeper explores what philosophers would call the “special duties” that family members owe one another—that is, families may be morally obligated to do things for one another that they would not be obligated to do for others outside the family.
What are some of these duties mentioned in the book?
Where do you think the line should be drawn?
• The central moral dilemma in this book is how parents should balance the needs of their children. The most obvious conflict is whether Sara and Brian should require Anna to give up a kidney to save Kate; but there is also the “invisibility” of Jesse within the family, which may be a cause of his acting out.
Do you think the Fitzgeralds have been right in the donations they have taken from Anna up to the point of the kidney transplant (ie: cord blood, bone marrow, leukocytes)?Do you feel that the kidney transplant is meaningfully different from these prior procedures? Why or why not?Brian and Sara have different ideas about whether they should ask Anna to donate a kidney. Which parent do you feel more sympathy with here, and why?Do you think it would be more acceptable for Brian and Sara to ask more of Anna if they treated her differently?
• Most organ donors are older than 18, but in rare cases, younger children have been donors to siblings. In most cases, children are not considered capable of providing informed consent for medical procedures, and their parents’ consent is used as a proxy.
Do you think there should be a legal minimum age for organ donation?
Should parental consent be accepted in cases like these, in which the child is genetically engineered to be a donor?
• Note to discussion leader—these questions are spoilers! Read after you’ve finished the book. At the very beginning of the book (p. 10), Anna says, “I’m an allogenic donor—a perfect sibling match. When Kate needs leukocytes or stem cells or bone marrow to fool her body into thinking it’s healthy, I’m the one who provides them. Nearly every time Kate’s hospitalized, I wind up there, too. None of which means anything, except that you shouldn’t believe what you hear about me, least of all that which I tell you myself.”
At what point in the book did you know that Anna was refusing to donate the kidney because Kate wanted to die?
Did this change your impression of Anna? If so, in what way?
Do you think it was fair for Kate to ask Anna to help her die?
Do you think Anna was right to do what she did, in seeking to be medically emancipated?
Should Sara and Brian have respected Kate’s wishes?
Bioethical Issue: Genetic Testing/IVF—
• Jodi Picoult was inspired to write this story by a real-life case. Molly Nash was diagnosed with Fanconi anemia, a rare and fatal genetic disease. Her parents went through five cycles of in vitro fertilization (IVF). Eventually, 15 embryos were created in the laboratory. Doctors used preimplantation genetic diagnosis (PGD) to test the embryos for two things: to determine which were free of the genetic disease, and to identify the embryo that would be the best donor match for Molly. Adam Nash was born in 2000, and stem cells from his umbilical cord, as well as bone marrow, were transplanted into his sister. Both children are doing well.
Under some ethical theories—notably Kantian ethics—we are not supposed to use people as means to an end, but rather should see people as “ends in themselves.” Does the Nashes’ conception of Adam violate Kantian ethics?The Nash parents, Linda and Jack, say they planned to have another child anyway. This technique allowed them to have a healthy child, and—as a bonus—to help save the life of their firstborn. Do you believe they were right to do this?Would it make a difference, in your view, if the parents said they had not planned to have another child?Fertility specialist Edward Wallach says, “There’s a disturbing utilitarian connotation overshadowing the parents’ decision to have a second child. In effect, this infant has been forced to donate his stem cells, which some might consider a form of child abuse.” Do you agree or disagree with Wallach’s assessment? Why?Bioethicist Jeffrey Kahn asks, “Is it worse to be brought into the world to be a cord blood donor than not to exist at all? Because that’s the choice. But for the fact that he was a match for his sister, Adam Nash wouldn’t exist.” How would you answer Kahn’s question?IVF is usually thought of as treatment for infertility. Is it morally acceptable to use assisted reproductive technology for reasons other than infertility?
Bioethical issue: “Designer Babies”—
• When Brian and Sara go on television to talk about Anna’s birth, Brian denies that they were trying to have a “designer baby.” (p. 102) He says, “We didn’t ask for a baby with blue eyes, or one that would grow to be six feet tall, or one that would have an IQ of two hundred. Sure, we asked for specific characteristics—but they’re not anything anyone would ever consider to be model human traits. They’re just Kate’s traits. We don’t want a superbaby; we just want to save our daughter’s life.”
Why does he deny that they’re trying to have a “designer baby?”
Do you agree with Brian that there is a moral difference between selecting for “socially desirable traits” and selecting for medically desirable ones?
Socially desirable traits would (presumably) be for the benefit of the child, whereas, in this case, the medically desirable traits are for the benefit of another person. Does this make a difference to you, ethically?
Although genetic engineering remains on the distant horizon, technological advances are bringing it from the imaginable to the possible. Policy makers are evaluating the potential options. Based on today’s discussion, what factors would you want policy makers to keep in mind as they decide the future of genetic engineering?