The Bioethics Bootcamp Series

by Sara Kowalski, Class of 2017, Humanities Fellow

Bioethics is a fascinating subfield of philosophy that you can study here at Rochester. It’s all about the ethics of medicine and biological research.

This past semester, the Humanities Center, the Career and Internship Center, the philosophy department, and the public health program worked together to put on a series of fascinating seminars designed to bridge the gap between the sciences and the humanities by bringing together students from a variety of fields for instruction and discussion of four unique topics: neuro-enhancing drugs, physician-assisted suicide, affordable access to health care, and uterine transplants.

Here is a brief introduction and overview to these topics. I hope it piques your curiosity so you’ll seek out the Bioethics Bootcamp Series next year!

1. Neuroenhancements with Prof. Richard Dees, PhD

This bootcamp discussed the ethics of using drugs to improve an individual’s mental and/or emotional abilities. The talk began with an introduction to neuroscientist Anjan Chatterjee and his foundational theories that (1) new drugs will lead to better brains, better moods, and better lives (2) and that people will use these neuro-enhancing drugs once they become safe enough, and (3) they will eventually become safe, so we need to think about what we are going to do when that happens.

In fact, we are already using neuro-enhancing drugs widely today! We prescribe Adderall to people with ADHD, memory and attention drugs to the elderly, and attention-improving drugs for military pilots, among other things. But where are the limits to these practices?

The over-arching principles concerning these this field of study are as follows:

• Autonomy: allowing individuals make decisions about themselves and their bodies
• Positive and negative consequences
• Inevitability (it’s a competitive world—people will do whatever they can to get an edge)
• Safety (will eventually overcome safety issues)
• “Therapy” vs. “enhancement”
• (In)equality of access
• Coercion into using these drugs
• Dignity: helping individuals to preserve their dignity
• Authenticity: allowing the individual’s mind to behave uniquely even if it does not fit the standards of what is considered “normal”

As a fun exercise, feel free to go through the following questions and make a decision, using the above principles in your reasoning.

• Would you prescribe drugs to a 60-year-old person to help their memory (which is diminished by only what is average for a 60-year-old)?
• Would you prescribe drugs to a pilot to perform better in a crisis?
• Would you prescribe a drug to help a student (with no diagnosed learning disability) do better on a test?
• Would you prescribe a drug to help someone forget a traumatic event?
• Would you prescribe a drug to a concert violinist (with no diagnosed anxiety order) for anxiety?
• Would you prescribe a drug to help control someone’s anger?
• Would you prescribe a drug to a new mother to help her bond with her child?
• Is it permissible to use drugs to alter someone’s personality?

2. Aid in Dying with Dr. Timothy Quill, MD

This bootcamp discussed various forms of aid in dying, ranging from hospice and palliative care to the controversial topic of physician-assisted suicide. As the Baby Boomers in America’s population are aging, these topics are more relevant than ever.

Key terms:

• Autonomy means that a patient always has a right to say no. Doctors cannot do anything to someone’s body without their permission.
• DNR means “do not resuscitate,” and people (particularly elderly people) sign one of these when they do not want a doctor to try to save them when they have been in a bad accident or succumb to their illness.
• Hospice is a philosophy of healthcare for the elderly that prioritizes comfort over treatment. It is generally a positive experience, the goal of which is neither to hasten death or prolong life. Access to hospice is a medical benefit in the US.
• Morbidity theory was the idea that modern medicine should make us live longer, be sick more rarely, and die more peacefully. However, this has backfired. With modern medicine, we live longer, but we are sick for a lot of it, and dying has become complicated and drawn-out
• Palliative care means pain and symptom management, and it is not just for the elderly. When this is used in conjunction with treatment, such as chemo-therapy in cancer patients, the patients usually live longer.
• Physician-assisted suicide is when the physician gives the patient the tools to administer their own death and the patient does so. This is legal only in some states in the US. It is legal in Canada. It is considered easier, mentally and emotionally, for the physician.
• Substituted judgment is when you are unable to ask the patient what they want so you must ask the family to make the decision for them. You should have the family think about the problem and come to a decision together while pretending the patient is there in the room with them.
• Voluntary euthanasia is when the physician administers the patient’s death at their wish. This is currently illegal everywhere in the US but it is legal in Canada. It is considered easier, mentally and emotionally, for the patient.

The question is: If you are a physician, and your patient doesn’t want to continue living, what do you do? Here are two scenarios you can use as exercises if you’d like to think about this further:

• SCENARIO 1: A 96-year-old woman gets into a car crash with friends after a night on the town gambling. She has bad burns and a lot of broken bones. She is in pain but can’t take too many painkillers or she will lose consciousness and have to be put on a ventilator to breathe (Note: you do not want to do that or she might never come off it). She is currently ten days into treatment and she just wants to end it. She has three children. Two of them understand her, and she knows that, which is why she selected them as proxies. They are willing to let her die. The third is ardently against it, but they are not a proxy. The team of doctors are currently working to get her pain under control so her decision is not a pain-based one. This grandma is a fiercely independent woman. She has asked you to prescribe her some sleeping pills she can overdose on, but physician-assisted suicide is illegal in the state where you practice. Hospice with palliative care, and treatment with palliative care are both options. But treatment and physical therapy will take years, possibly much more than she has to live. What will you do?
• SCENARIO 2: A man with ALS has become bed-bound. (Note: ALS is a neuro-degenerative disease. There is no cure.) At night he uses a ventilator to breathe. He says he is done and doesn’t want to go on. Turning off his own ventilator would kill him, but it would be slow and incredibly painful. You could help him by steadily increasing his morphine to match his pain until it is over. Or you could prescribe him something and tell him how much to take to overdose. Physician-assisted suicide is illegal in the state where you practice. What will you do?

3. Right to Healthcare with Prof. William Fitzpatrick, PhD

This bootcamp was all about the philosophical justification for affordable healthcare for all. It began with the big questions: How should we conceive of the goal of a health care system in a just society? And why? Is there a moral “right” to health care? If so, what would that right entail?

Here is the outline of the argument:

• The Axiom of Equality: A decent society is premised on the idea that each of its members possess a basic human dignity or worth such that each person (or each person’s life) matters and matters equally (in terms of intrinsic value); we are a society of equals.
• If we are a society of equals with respect to basic human dignity, then each person’s well-being matters equally, and so each person’s basic good/well-being is properly an object of equal societal concern: a decent society that properly respects its members’ dignity will show an equal and proper level of concern with their basic good/well-being.
• People’s well-being/basic good requires both: (i) their having meaningful control over their lives (i.e., meaningful exercise of autonomy as far as possible without undermining others’ similar control over their lives) and (ii) their being able to meet basic needs.
• A decent society must therefore be structured to give equal consideration to each person’s basic good, by establishing, as far as available resources allow, the social and material conditions that enable a member to live with meaningful control and with basic needs met (i.e., needs associated with both physical and social functioning).
• And part of securing these basic conditions involving control and basic needs is providing affordable access to health care.
• Therefore, a decent society must, as far as available resources allow, secure affordable access to health care for all its members (not just the wealthy, talented, well-connected, or lucky ones).

Rawls’ Veil of Ignorance, also known as Rawls’ Original Position, is a thought experiment first introduced by John Rawls in 1971. It goes like this:

Imagine you are designing a society, making decisions about every part of it. You are designing this world while standing behind a “veil of ignorance.” This means you know nothing about yourself. You could be anyone. You have no idea what race, gender, or sexual orientation you will have when you enter the society you’ve created. You have no idea what mental or physical handicaps you may be born with or develop over the course of your life. You do know what socio-economic background you will be born into or what accidents or lucky-breaks you will encounter in life. This state of ignorance is called “the original position.” How will you design the society so that you will be treated fairly and have the best chance to succeed?

The purpose of this thought experiment is to strive to make policy decisions (or any decision for that matter) selfishly while imagining you are behind this veil of ignorance. Naturally you will want to make a decision that benefits you no matter who you end up being. That way, the decision will be fair to everyone equally.

4. Uterine Transplantation with Prof. Marjorie Shaw, JD, PhD, and Dr. Wendy Vitek, MD

This bootcamp was a discussion of the ethics of uterine transplantation surgery, which is a relatively new advancement. To date, there have currently been eleven successful births who from uteruses that have been transplanted from a live donor and one successful birth from a deceased donor. (Note: deceased in this case means braindead. Bodily functioning is required to preserve the uterus.)

Here are the four main principles of bioethics. Keep these in mind as you read:

1. Beneficence: you must help your patients
2. Non-maleficence: you must not hurt or kill your patients
3. Justice: you must not commit crimes or injustices
4. Autonomy: patients must make their own decisions

The recipients of uterine transplants are reproductive-age women who were born without a uterus or who have lost their uterus due to illness or injury. The donors are women, ages 30–60 (can be post-menopausal) who have no use for their uterus and wish to donate it. Usually this woman is a loved one such as a mother, aunt, sister, or close friend. Donors may also be someone who is brain-dead due to an accident and is signed up to be an organ donor or her family chooses to have her organs donated.

This surgery is a long procedure (5–12 hours) with a long recovery for both recipient and donor (12 weeks). There are risks of infection, organ rejection, and injury to the urinary track. A woman with a transplanted uterus must give birth by C-section, and she can only have up to two C-sections before her uterus must be removed, which means two to three additional surgeries. The fetus is more likely to have birth defects, low birthweight, premature birth, or stillbirth.

Adoption and surrogacy are alternative ways of having children. But for some women, it is very important to experience their own child growing inside of them.  To them it is an integral aspect of their identity as women, and they want to have their own uterus and their own child.

Keeping all of the above in mind, and using the four basic principles of bioethics, consider the following scenarios.

• SCENARIO 1: Your patient and her husband want to have a child of their own, but she was born without a uterus. She is 33 years old. She and her husband already have two children from the husband’s previous marriage. Your patient’s 36-year-old sister has volunteered to donate her uterus. She already has two children and doesn’t want any more. Assuming both women pass all the necessary physical and psychological exams, would you do the surgery?
• SCENARIO 2: The same patient, but now it is her mother. Her mother is 52 years old and already had two children (the two sisters), and she wants to donate her uterus to her daughter. She feels guilt that her daughter was born without one. She feels it is her fault, and she also feels it is her duty to do whatever she can to give her daughter the fullest life. Assuming both women pass all the necessary physical and psychological exams, would you do the surgery?
• SCENARIO 3: The same patient, but now it is her grandmother. Her grandmother is 76 years old and healthy. She is well past menopause, and the way she sees it, her uterus is just gathering dust. She’d love to donate it to her granddaughter. Assuming both women pass all the necessary physical and psychological exams, would you do the surgery?
• Assuming you choose to do at least one of the surgeries, if given the choice of all three donors, who would you choose?

I hope you enjoyed these four tastes of bioethics! I hope it has gotten you thinking, and that you will continue to think about questions of biological research and medical treatment. If you’d like to learn more, consider majoring, minoring, or clustering in bioethics at the University of Rochester!