Our Bodies, Ourselves and the birth of bioethics

The first works of academic bioethics I read were by notables such as Peter Singer, James Rachels, and Bonnie Steinbock, but that is not where my interest in bioethics actually began. In the 1980s, I ran across the book, Our Bodies, Ourselves, and I was immediately captivated by the book and the movement it represented, even if I wasn’t part of the particular movement.

The book began as an outgrowth of the feminist movement when 12 women met in 1969 to discuss their experiences with doctors. They began compiling and disseminating their stories and information to empower women to take charge of their own healthcare decisions. Bioethics as a professional field developed in the 1970s, but the authors of Our Bodies, Ourselves were ahead of professional bioethicists by a few years. In 1970, these authors released a booklet titled “Women and Their Bodies.” While professional bioethicists focused on the role of autonomy in healthcare, these women were creating autonomy by giving women information and the courage to take charge of their own healthcare. You can read more about the history here.

At the time these women met, abortion was illegal and most doctors were male. As the authors explained in the preface to the first edition of the book, “we wanted to do something about those doctors who were condescending, paternalistic, judgmental and noninformative.” To combat the attitudes they found common in doctors, they presented information on birth control, abortion, menstruation, masturbation, and sexuality in frank and shame-free language. As a outcome of the approach, they said, “Our image of ourselves is on a firmer base, we can be better friends and better lovers, better people, more self-confident, more autonomous, stronger and more whole.”

Our Bodies, Ourselves, the book, continues to be published (now in more than two-dozen languages), and the organization, Our Bodies Ourselves (OBOS), continues as a nonprofit organization promulgating information on girls’ and women’s health and sexuality. Their efforts now extend globally through the Our Bodies Ourselves Global Initiative (OBOGI).

These women approached bioethics from the ground up and changed the world.

This is how I feel bioethics should be conducted for the greatest impact. Patients, ideally, should drive the focus of bioethics and inform both ethicists and healthcare providers of what issues are important. The only way for this to happen is for patients to tell their stories of how they experienced healthcare, medicine, illness, and even death.

To that end, I am inviting patients to submit their own stories of illness and medicine to Ethics Beyond Compliance. If you would like to submit a story related to your experience of illness (either as a patient or as a caregiver) or grief, please send it to me. I will have a story coming up in the next few days, but I hope to make it a regular feature of the blog.

See also: O is for Our Bodies, Ourselves

It is Time to Shed Sunshine on Informed Consent

Most patients realize doctors receive gifts from the pharmaceutical and device-

A patient having his blood pressure taken by a...
A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)

manufacturing industry. When we see industry logos on pens, clocks and posters, we don’t assume the doctors ordered these items from the merch page of these companies, but most of us aren’t aware of how lucrative the payments to doctors can be.

A story that ran in the New York Times described the experience of Dr. Alfred J. Tria, who made $940,857 in about two years for promoting products and training doctors in Asia to use them. The article notes that Tria’s experience may be exceptional, but in two and a half years, industry paid out $76 million to doctors practicing in Massachusetts alone.  I’ve been reading about this subject for a while, and even I was surprised that someone could make half a million dollars in a year on a side job.

In a slightly different type of payout, Oregon recently concluded a court case against two doctors who “put heart implants into patients without telling them that a manufacturer’s training program put a sales representative into the operating room.” The doctors would receive between $400 and $1,250 each time they completed a surgery using Biotronik defibrillators and pacemakers. The state argued that patients should know when doctors’ recommendations may not be based entirely on the needs of the patient. One of the doctors in the case earned more than $131,000 from 2007 to 2011 through implant surgeries. Doctors also received speaking fees, expensive meals, and other gifts.

As part of the Affordable Care Act (Obamacare), the Sunshine Act now requires industry to start collecting data on payments to doctors now, and the information will be made available to the public next year on a government website. This will enable patients to learn how much their doctor receives from the industry each year, though there may still be hidden incentives.

For example, doctors may be in profit-sharing arrangements with facilities or they may actually be the owners of the facility. A recent study by Dr. Matthew Lungren found that doctors who had a financial stake at an imaging facility ordered tests with negative results at a much higher rate (33 percent) than doctors with no financial stake. In other words, it appears that doctors order unneeded tests because they are making money off of them, not because the patients need them. Lundgren suggests that patients should ask whether they are being referred to a facility in which the doctor has a financial stake. I say the doctor should volunteer the information.

Beginning next year, the Sunshine Act will make it much easier for patients to discover their doctors’ financial relationships with industry, and I’m thrilled for this development. For those who think Obamacare is a complete disaster, just take a minute to relish this one positive development.  Still, I think the movement should go further. I think financial disclosure should be part of the informed consent process. When your doctor is telling you all the risks and benefits of treatment, I think he or she should also say, “I get paid $1,000 to do this surgery,” “I will make $100 off this MRI,” or “I own stock in the company conducting this medical research.”

I believe patients want this information, and I don’t think they feel it is their responsibility to search for it. True informed consent is only possible in light of complete financial disclosure.

What is Bioethics? Environmental and Economic Justice

Like many people, Peter Singer was the first bioethicist to occupy any space in my consciousness. He first got my attention with his concern for animal welfare and calls for vegetarianism. I suppose he is best known for saying we should not eat animals but that it is sometimes acceptable to kill our babies, which many people find upside down, especially if they haven’t actually read all his arguments, and few of his critics seem to have read his arguments.

But Singer has also spent a great deal of effort offering suggestions on relieving the problems of globalization, wealth inequality, and further destruction of the planet. One can offer reasoned objections to his suggestions, of course, but his choice of topics and concerns helped define what bioethics was for me.

Singer’s concerns fit nicely with the term “bioethics” as originally conceived by Van Rensselaer Potter in 1970. Potter said bioethics should be “a new discipline that combines biological knowledge of human value systems.” Potter saw bioethics as a systematic attempt to ensure the survival of the planet and all the people on it. One of Potter’s goals was to eliminate “needless suffering among humankind as a whole.”

Van Rensselaer Potter

Unfortunately, by the middle of the 1970s, the term “bioethics” had already been co-opted by the medical establishment and applied primarily to medical ethics. Concerns for ensuring the well-being of humankind were replaced by concerns for patients and doctors, with a strong emphasis on patient autonomy. Today’s bioethicists tend to ignore problems that have nothing to do with healthcare or medical research, but millions of people in the world have no access to healthcare and so escape any attention from bioethicists at all, which is itself an injustice.

To be sure, bioethicists are still in the world working for justice and, in some notable cases, the survival of the planet, but those working on themes outside of healthcare or medical research are outsiders at best. (For a couple of examples, see Martha Nussbaum and Thomas Pogge.)

I will continue to argue that this is the wrong approach to bioethics. Potter’s and Singer’s concern for promoting the health of the earth and all its inhabitants is the only reasonable way to think of bioethics, and those who disagree are the ones who should defend their positions.

What are some of the issues we need to address? Just to get us started, we can look at environmental justice, war, climate change, worker’s rights, wealth inequality, access to water, human rights abuses, women’s equality, and children’s welfare. Too broad? The problems that threaten life and health are vast. Medical practice requires an enormous cadre of professional ethicists to develop policy and practice guidelines, of course, but bioethicists following the vision of Potter should be welcome at the table as well.

Genetic testing, the Affordable Care Act, Ethics and You

In Slate, science writer Virginia Hughes published an essay decrying what she sees as superfluous or even harmful discussions around the ethics of genetic testing. She says, rightly, that some ethicists are discussing the wisdom of closing the door on testing after the “personal genomics horse has bolted.” It is true that genetic testing is here and will not go away, but we certainly haven’t worked through all the challenges posed by testing, information-management, and client care.

One of the major ethical challenges of testing, I hope, is being helped by passage of the Affordable Care Act. Starting in 2014, patients with preexisting conditions in the US will be able to purchase health care insurance through affordable insurance exchanges. Currently, though, one fear of testing is that it would reveal preexisting conditions that would otherwise be invisible and make it impossible for some people to get insurance coverage even while healthy.

Hughes hardly mentions that particular reason for the concerns related to testing.  She says in one sentence, “Would adding this data to someone’s medical record affect health insurance rates?” After raising this question, she neither answers it nor discusses it. I would think the ability to buy and afford health insurance is one of the major concerns for patients who consider the risk of exposing genetic determinants of future diseases. Medical testing is assumed to be confidential, but patient records are, of course, shared with insurance companies.

Another concern for people considering genetic testing is that the information revealed by the tests may lead to discrimination in employment. Without legal protections in place to ensure that employees are protected in the event a genetic test reveals a likelihood of future illness or disability, concerns about having the information available are quite rational.

Setting aside concerns about insurance and employment, which are monumental, Hughes addresses the issue of how information may harm patients. She is of the mind that full disclosure is always the best policy for health-care providers. The question of when it is appropriate to withhold health information from patients seemed to arise as soon as anyone began providing health care. The question has been around so long, of course, because it is both extremely important and because different patients express extremely divergent preferences. While some want full disclosure, others would prefer to be left to enjoy their lives ignorant of impending doom.

The most confusing part of Hughes’ essay is when she states, “While wasting time debating ethical dilemmas, the medical community has neglected to talk about more pressing logistical problems: 1) How to ask people ahead of time what, precisely, they want to know (and don’t want to know); and 2) How to improve the medical system so doctors can follow through on those wishes.” The two “logistical problems” she identifies are exactly the kinds of concerns expressed by the “ethical dilemmas” noted by ethicists. Yes, what is the best way for doctors to give patients exactly the kind of information they want without revealing unwanted information? These are the ethical dilemmas ethicists are wasting time debating.

The limits of client autonomy in psychotherapy

In the movie, Analyze This, a psychiatrist has to deal with treating a criminal whose anxiety interferes with his ability to do his job, which includes killing people. The movie is a preposterous and rather horrifying scenario, but it doesn’t challenge accepted ethical guidelines on client autonomy—clients do not have a right to request treatment to enable them to harm others. Such demands are well outside of the scope of client autonomy.

While no one (all right, so I can’t promise there is not some sick exception out there) thinks clients should have unlimited autonomy, maximizing autonomy has been particular focus of bioethics since its inception in the 1970s. This, combined with movements in psychotherapy and feminism to empower both clients generally and women in particular, gives way to some perplexing situations. This is particularly true, to my mind, in cases of so-called “internalized oppression.”

In the 1980s, feminist philosopher Dale Spender rejected the idea of singular truths as being too oppressive, claiming instead, “Only within a multidimensional framework is it possible for the analysis and explanation of everyone to avoid the pitfalls of being rejected, of being classified as wrong.” Spender was specifically advocating a multidimensional view of reality as a way of empowering women.

Similarly, collaborative therapy intends to empower clients by rejecting preconceived notions of truth and meaning, or even of therapeutic goals. In her 1997 book, Conversation, Language, and Abilities, Harlene Anderson writes, “A therapist is not a detective who discovers the truth, or what is true or truer, false or falser.” She goes on to say, “A therapist does not control the conversation, for instance, by setting its agenda or moving it in a particular direction of content or outcome. The goal is not to take charge or intervene.”

So, what is to be done with a client who embraces and fails to question a system that is oppressive, hierarchical, and one-dimensional? If a client has embraced a system that devalues the worth of the client, it would seem honorable and right for the therapist to guide the client to question a system that is degrading and demoralizing, rather than helping the client explore ways to function more effectively within that system. Of course, a therapist may simply open a conversation and hope the client with find liberation on his or her own, but this is a disingenuous respect for multiple truths.

Commenting on the goals of multidimensional feminism, Jean Grismshaw said, “The fact that one group has power over and exploits another, cannot be reduced to anyone’s belief that this is so; nor does the fact that someone does not understand their own experience in terms of oppression or exploitation necessarily mean that they are not oppressed or exploited.”

A belief in moral progress entails a conviction that some truths are better than others. We must believe that changing what we believe can make the world better. In Plato’s allegory of the cave, the philosopher who has become enlightened will not want to return to improve the affairs of men, but it is a duty to do so. If those who are in chains do not realize they are in chains, those who are free must help them.

William James, who I believe is one of the greatest psychological theorists of all time, also rejected the certainty of truth, but he noted that when we give up certainty, we “do not thereby give up the quest for truth itself. We still pin our faith on its existence, and still believe that we gain an ever better position towards it by systematically continuing to roll up our experiences and think.” James also believed in progress—epistemic progress and social progress. A commitment to truth does not demand that we discount the knowledge or experience of others, but it does demand that we constantly seek what is better in our lives.

While we may not pass judgment on someone who does not share our values, the values we hold most deeply must remain important to us. If our own values mean nothing to us, our lives have no meaning. The postmodern therapist has values and wants others to share them; otherwise there is no point in seeking healing. If we don’t seek more valuable lives, there is no point in living.

My question for Ron Paul: Autonomy and health care

Earlier this year at the Tea Party debate, Wolf Blitzer asked Ron Paul if a person who chose not to buy health care should be left to die. Paul responded that this person’s friends and community could support him and pay his bills. Many in the audience seemed to be all right with letting this person die.

Conservatives and libertarians both express a strong commitment to autonomy, which they sometimes refer to as freedom. The new health care law is unacceptable they say, because it requires individuals to purchase insurance. People should not be required to purchase insurance, but they should be responsible for the consequences if they do not have insurance. Of course, this scenario is rarely a problem for anyone, and Blitzer asked the wrong question.

I would want to ask a different question. I want to know about the person who has worked all her life and been successful. After 20 or 30 years, she decides to expand her opportunities by starting her own business. Remarkably, her business is profitable in its first year. She can afford to buy insurance, but she cannot buy adequate coverage because she has preexisting conditions that every major insurance carrier refuses to cover. When she contracts a serious illness, she is driven into bankruptcy because of medical bills that are astronomical but quite common. Should our country let her die? Should she be permitted to slide into bankruptcy?

Autonomy is not quite as simple a question as it apparently seems to Republicans and libertarians. Philosopher Isaiah Berlin described two types of liberty: one is negative and the other is positive. For conservatives, it is imperative that individuals not be forced to do something they may not want to do and no government intrusion is acceptable. This is negative liberty. For liberals, such liberty is meaningless if one is unable to make the choices he or she desires, which is positive liberty.

Describing the liberal view of positive liberty, Berlin says,

“It is true that to offer political rights, or safeguards, against intervention by the state, to men who are half-naked, illiterate, underfed, and diseased is to mock their condition; they need medical help or education before they can understand, or make use of, an increase in their freedom. ”

While conservatives will not force someone to purchase insurance, liberals want to ensure that everyone has the option to have health care. Everyone who needs health care and cannot obtain it becomes a liberal in an instant.

The number of uninsured in the United States is said to be around 50 million, but many more than that have inadequate insurance. Unfortunately, most people do not realize they are underinsured until it is too late. Many people only learn that their treatment will not be covered by insurance after they have received the treatment. What kind of autonomy is this? What is the value of liberty if it leaves one with no options to avoid bankruptcy, untreated illness, and death? Is this really what we want to be?

On Lying

Anyone who has taught an introductory course in ethics has discussed the morality of lying, and most of us find that few people endorse an absolute prohibition against lying. Though we like to reject “situation ethics,” we tend to say that whether one should lie “depends on the situation.”

Lies
Lies (Photo credit: Gerard Stolk (vers l’Avent))

Against Kant’s absolute prohibition of lying, we offer the Murderer at the Door who wants to kill our innocent children. Surely, we should lie to throw the murderer off the trail of our children and, one would hope, into the hands of the police. This kind of lie is justified because it saves or has the potential to prevent great harm, or so it seems to some of us who don’t find Kant compelling.

On the other end of the spectrum, we find ourselves wanting to demand the truth even when dishonesty (or withholding the truth) appears harmless. We have the case of police who have taken embarrassing photos of an assault victim to be used as evidence against the perpetrator but who then use the photos for the amusement of themselves and their colleagues. The victim may never be affected by this secondary use of the photos so long as the victim remains completely unaware of them. Doing such a thing seems quite wrong, though, or at least it does for me.

In relationships, we have all kinds of information that could help or hurt our partners. Should we tell them what their friends have said about them behind their backs? Should we go so far as to tell a complete lie (“No, Susan has never said an unkind word about you!)? Learning every detail of what your friends and colleagues have said about you is likely to be painful at best. I personally recommend sheltering yourself from this as much as possible. I also think it is possible to share too much information.

On the other hand, if your friends are so hateful towards you that they cannot be considered friends, you might want to know that. So, we are tempted to say we want complete honesty except when it is more painful or harmful than a lie. This leads to the problem that we do not always know what is better or worse in the end. Lies have unintended consequences, and we feel responsible for their consequences while we do not feel personally responsible for the consequences of the truth, although many people have said something along the lines of “I never should have told the truth!”

So, we are left with decisions based on the context and situation. We must choose between protecting someone’s feelings and offering full disclosure. There are a number of things we can consider in our decisions. First, I think we may consider how the other person will react if the dishonesty is discovered. Many people have said that if their death is imminent, they would want their friends and family to lie to them.

We can also consider our own motivation for the lie. Are we lying to protect others or to protect ourselves from taking responsibility for our own actions? When we are only trying to cover our own footprints to avoid having to confront truths about ourselves or our actions, I think the lie is most likely not justified.

Finally, as much as consequences cannot be predicted, we really must think of what outcome we are trying to achieve. In many ways, this last consideration echoes the first two, but it deserves a little focus on its own. We must think of what good the lie may produce if it is believed and what pain it may produce if it is exposed. I suppose we must also attempt to evaluate what pain may result if a lie is believed. (E.g., what is the harm in telling people they will live 10 years when you know they have only a few hours left?)