ethics

Cloud computing, your patient information, and privacy

R. Horton

In the not too distant past, healthcare providers sometimes worried that reliance on technology might put private patient information at risk. For example, they might have debated whether having a computer technician restore information from a damaged hard drive might be unethical, as the technician would see confidential patient information.

Gradually, both patients and providers became comfortable with the burgeoning reliance on digital storage of patient records. It was, in fact, the convenience of being able to share the information with specialists, pharmacists, specialists, and so on that made electronic medical records so appealing. Further, patients enjoy being able to access their records online, communicate with providers through email or other web-based technology, and make scheduling and payments over the Internet.

When I first heard the phrase “cloud computing,” I was excited to think I might be able to put things in “the cloud” and access them from various devices. Indeed, I do enjoy being able to access the music and videos I have on iTunes from my laptop, desktop, and handheld devices. I assumed, though, that my files were in the cloud because I wanted them there, but I was surprised when someone told me of having all her files restored by a technician who got them from the cloud. She had no idea that her files were in the cloud in the first place. As excited as she was to have these important files restored, it was a bit disconcerting to know that they were in the hands of third (and fourth or fifth?) parties in the first place. How many technicians in how many companies have access to our information?

So, now we move to electronic medical records, a digital archive of our most private information. As noted in the American Medical News blog, in 2011 55 percent of office-based physicians used electronic health records and 41 percent of those were in a cloud-based system. The blog, by Pamela Lewis Dolan, cites information from Jonathon Padron, senior client service analyst for comScore, and Internet analytics company. From the blog: “Because EHR data give marketers the ability to target messages in a more granular way to the specific physician, it’s very effective for marketers, Padron said. For example, the system can identify the condition a physician is looking at and automatically pup up a drug that can treat it.”

These ads are linked to keywords, of course, just as you see ads related to a condition you search on WebMD. We trust that our searches, the doctors’ searches, and our names and medical records are not combined for nefarious reasons. Howard Burde, a health IT lawyer, offers this assurance: “The technology is improving such that data is more and more secure all the time. The problem isn’t the technology, it’s the people.” Everything is all right then, see?

I see two bits of take-away information in all of this: 1. Our private health information is being spread further in cyberspace than we might care to think about. 2. Pharmaceutical and device manufacturers will aggressively use any means available to insert themselves into our healthcare decisions by targeting healthcare providers and patients with intrusive influence at all levels. Of course, if access to healthcare, or at least health insurance, is actually guaranteed by the Affordable Care Act, we may be less concerned about our information being shared. I don’t want to be embarrassed by my private information, but I prefer being embarrassed to being uninsured.

Genetic testing, the Affordable Care Act, Ethics and You

R. Horton

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.

Why my students love Ayn Rand

R. Horton16 Comments

I think my Introduction to Ethics class is fairly typical. We start with Epicurus and work our way through Aristotle, Jeremy Bentham, John Stuart Mill, and Immanuel Kant. After those heavy hitters, I try to lighten things up with some essays from contemporary philosophers (in the most general interpretation of the term). So, after reading some Kant, I move to an interview with Ayn Rand for a little break.

This may not be such as good tactic. When I first chose the assignment, I did so because the interview reveals Rand’s beliefs in a way that is stark and easily digested. I assumed anyone reading it would agree with me that her philosophy is reprehensible, and I would be serving the greater good of humanity by having them exposed to it. I try not to reveal my biases in class, and I really don’t want to tell them what to believe. I just hope they will hate Rand. I’m less concerned about what they will like.

Nonetheless, I always have a few students who declare that Rand is the first reading they have liked. I ask probing questions hoping to find that maybe they didn’t really get what she was saying, simplistic as it is, but I generally have to concede that they really do like what she says. As a result, I think I have created a small band of ardent Rand supporters over the years. The Tea Party can thank me. And I think I’ve identified the two reasons she is so popular with students:

1. As I mentioned, the assignment is easy to read and digest. After slogging through Mill and Kant, I can certainly understand why they would be relieved to find something they can understand on the first pass, even if the reading completely flies in the face of their supposed religious convictions. But the second point is more meaningful to me.

2. Rand is easy in another sense as well. She really doesn’t demand much of her readers. She tells them they must be selfish and pursue only what is truly gratifying to them. Now, Epicurus said that they should seek a pleasurable life through contemplation and serious examination of the world around them with great respect for their community. Aristotle tells them they must practice constantly to become virtuous in a way that will enable not only their personal flourishing but the success of their society. Mill tells them to seek their own pleasure but that they will derive the greatest satisfaction from pleasures that require much practice and refinement to achieve. And Kant tells them they can’t lie under any circumstances. Furthermore, they must help people who are worse off than they are. To follow Kant or any of the others, they would have to put out a great deal of effort to change how they live, but to follow Rand’s advice they don’t see that much more effort is required. In their minds, at least, they are already living Rand’s ideal life. And, they get to feel pretty self-righteous comparing themselves to recipients of government aid (my students do not consider low community college tuition to be a form of government support).

I suppose I am hopelessly naive to think my students will take my class looking for hints on possible self improvement. They are seeking validation for their current lifestyles, not ideas on how to improve.

Except when they are not seeking the easy way. It is easy for teachers to get discouraged and forget all the talented and hard working students who are in constant search of new information and new challenges. Many of my students have now gone on from the community college to universities and graduate school. They have admirable careers in fields such as law, science, health, and social work. I am humbled by them.

http://www.youtube.com/watch?v=K9mJpVf4dkc

For further reading:
1. 10 (insane) things I learned about the world reading Ayn Rand’s Atlas Shrugged
2. How Ayn Rand Seduced Generations of Young Men and Helped Make the US into a Selfish, Greedy Nation

What Makes the Trayvon Martin Case Different From Other Murders

R. Horton

I did not intend to make any comment about the Trayvon Martin case as I thought there was plenty of thoughtful commentary on it already, but I’ve been reading too  many blogs on it today, and it seems to me that many people are missing the point. As I see it, it does not matter whether George Zimmerman is Hispanic. It doesn’t matter whether Trayvon got into trouble in school (how many teenaged boys never get in trouble at school?), wore gold fronts on his teeth for a camera, or tried to act tough. If Trayvon’s problems make him deserving of death, then many people I love and admire would fall in the same category. How many of us want to be judged for the decisions we made when we were 16 and 17 years old? And it doesn’t matter that many other teenagers are murdered every year. This case is different.

It is different because of the police response to it. It is different because the police say they did not have enough evidence to arrest anyone, but they do not appear to have made much effort to gather evidence. They seem to have spent more time trying to find evidence Trayvon was up to no good than they spent trying to find out whether he was the victim of stalking and murder. The police seem to have dismissed the case as just another death of a young, black criminal. They seem surprised that anyone cared enough about Trayvon to pursue the case and try to get the facts.

Yes, it is a tragedy when anyone is murdered, but it is an outrage that young men of a particular color are viewed as disposable human beings by many in our society. That someone’s life could be of so little value that it is deemed unworthy of investigation is appalling.

Don’t force me to pay for your religious practice

R. Horton

Members of the Catholic Church have expressed outrage that the new health laws require them to provide contraception to women. This was weeks ago, but Catholics continue to double down on this position. They say the state has no right demanding that they violate their own religious beliefs.

This argument makes perfect sense. The government has no right telling private individuals how they should conduct their affairs. So long as they aren’t taking public money, serving the general public, or hiring non-Catholic employees, there should be no controversy at all.

But according to an article in Mother Jones:

Under Obama, Catholic religious charities alone have received more than $650 million, according to a spokeswoman from the US Department of Health and Human Services, where much of the funding comes from. The USCCB, which has been such a vocal critic of the Obama administration, has seen its share of federal grants from HHS jump from $71.8 million in the last three years of the Bush administration to $81.2 million during the first three years of Obama. In fiscal 2011 alone, the group received a record $31.4 million from the administration it believes is virulently anti-Catholic, according to HHS data.

Under the first amendment, the government must not establish a religion. Funding of faith-based charities avoids violating the first amendment by demanding that those charities do not use their services to promote their faith or discriminate against those of other faiths.

Requiring them to use public funds to offer public services without discriminating against non-Catholics is not an attack on religion. Permitting charities receiving public funds to discriminate against non-Catholics would be using my taxes to promote religious views I find reprehensible. I am amazed that conservatives, libertarians, and Tea Party members aren’t outraged at this use of taxpayer money. Surely conservatives believe we should trim the federal budget and protect religious liberty at the same time.

If Catholic Charities want to exclude contraception from their health plans and refuse to recognize the rights of same-sex marriages, they should immediately refuse all public funding, including federal, state, and local funds. If they refuse, the federal government should simply withhold the funds (courts have supported such actions in the past). Or, they can continue to receive taxpayer money and offer their services without discrimination.

The unsexiness of Denzel Washington and the ethics of evolutionary psychology

R. Horton

In a blog on the laws of sexual attraction, Andrea Kuszewski explains why we may be more sexually attracted to people who are not quite perfect, a little asymmetrical. She says that Denzel Washington is extremely attractive and appealing due to his symmetry and overall good health. This would make him a great mate, she explains, because:

Denzel Washington after a performance of the B...
Denzel Washington after a performance of the Broadway play Julius Caesar in New York City (Photo credit: Wikipedia)

From an evolutionary standpoint, symmetry implies fitness to reproduce. Animals and organic objects with a great deal of symmetry are generally without genetic flaws, and thus more likely to reproduce and have viable offspring. It would make sense that these are preferred for purely mating purposes.

This must be why so many women want to sleep with Denzel. They are imagining how wonderful their babies might be. If they really wanted to have pleasurable sex, Kuszewski says they would prefer Joaquin Phoenix, who has just the right amount of asymmetry to drive the women wild with desire. She says we like people like Joaquin because, “We visually interpret their features longer, so naturally we form a greater attachment to them, and thus find them more alluring.”

All right, I’m no scientist, but this just doesn’t sound right to me. Can you imagine there ever being a moment in our evolutionary history when someone had to look as good as either Denzel Washington or Joaquin Phoenix in order to reproduce? If that had been the case, I aver there would be far fewer humans on the planet right now. Quite the contrary, it seems the human proclivity to have sex just for pleasure has helped to ensure that the overwhelming majority of people, symmetrical or not, find at least one mating opportunity during their lives.

The other problem I see with the theory is that contraception has not been reliable for most of human history. Women got pregnant, regardless of whether their attraction was based on parental fitness or pleasurable sex. To be sure, humans compete for the best mates, but at the end of the day (or night), they tend to take the mate that is available, and reproduction ensues. If humans are undone by evolution, it will be because of our great success, not our failure, at passing on our genes.

Of course, I’m being a little facetious here. I do understand that the theory only tries to explain why one mate is preferred over another and that it makes no claim that slightly unattractive people are unable to find mates, but I think it fails to explain about as much as it explains. Michael Taft wrote a defense of evolutionary psychology here. I won’t go into his arguments here, as I’m not really trying to discredit an entire field. However, he mentions two good reasons for holding evolutionary psychology theories in suspicion. They tend to reinforce contemporary notions of sex and sexuality (too often in a reactionary manner) and they offer theories that are wholly untestable. We can do elaborate tests to see what kinds of faces people find attractive, but drawing conclusions about our ancestors on this information is little more than conjecture.

Now, I really dislike when non-scientists claim that scientists are misinformed. For example, the people who know the least about climate science are the ones claiming that climate science is a big hoax. Perhaps I am misguided about evolutionary psychology. I will await further education.

Related articles

Jana Pochop on Death and Dying (in song)

R. Horton1 Comment

For most of human history, it was ordinary for families and even close friends to be present for the death of a loved one. People knew the sights, sounds, and smell of death. For a sick person to die alone would be considered an extreme misfortune. But the 20th century moved death from home to hospital. As Philippe Aries wrote, “The hospital is the only place where death is sure of escaping a visibility—or what remains of it—that is hereafter regarded as unsuitable and morbid.” While it was once a great tragedy to die alone, many now consider it a tragedy when one must be present for the death of a loved one.

To be sure, no one who witnesses the death of a loved one escapes trauma. Death is painful, and even those who are prepared for it often panic at the last moment. When people plan to die at home but end up dying in a hospital, caregiver panic is frequently the reason. The last moments of life can be excruciating to watch, and caregivers often call an ambulance to bring relief for their loved ones.

Caregivers who have a home healthcare provider to reassure them do much better. When the family knows the process is normal and unavoidable, they are able to brace themselves against the pain and endure it to the end. The advantage of hospice over home death is that professionals are responsible for all medical decisions, and the family can focus on comforting their loved one, grieving, and saying farewell.

I’ve thought a great deal about this process and how it may improve our society if we once again become familiar with death and dying in a more personal manner. I honestly believe this experience gives people a deeper experience of life, grief, love, and loss. I’ve read about it, and I’ve written about it, but I was surprised to hear so many of my thoughts on the subject expressed in a folk song of just a few minutes.

Last night I went to see a performance by Susan Gibson, an extremely talented singer/songwriter. During the second set, Gibson invited Jana Pochop on stage to sing two songs. The first was about what you will do in the moment when your soul leaves your body. The imagery was compelling and profoundly sad. When this song is available, I would recommend it to help families prepare for the imminent death of a loved one. I also believe the song will be appropriate for a medical humanities curriculum.

I didn’t intend for this blog to ever have anything to do with folk music, but I also did not anticipate folk music intersecting my interests in medical humanities, caregiver narratives, home/hospice death, and survivor stories. The following video is not of the song in question, but it gives you an idea of Jana Pochop’s talents.

[youtube=http://www.youtube.com/watch?v=fnx_lNuyoNA]

Citizens United, Unions, and Corporate Persons

R. Horton1 Comment

We’ve all heard that the Citizens United v. Federal Election Commission ruling by the Supreme Court opened the door to unlimited and undisclosed spending to influence elections. It is widely presumed that the court’s decision granted first amendment rights of free speech to corporations by declaring them to be “natural persons.” But corporations have had rights as persons for a long time. By most accounts, the court has recognized corporations as having all the rights of natural persons since 1886. For a detailed discussion of the 1886 ruling, see Thom Hartmann’s Unequal Protection: How Corporations Became “People” and How You Can Fight Back.

The Citizens United ruling did not establish corporations as people but declared that spending on speech cannot be limited because such limits would deny flesh and blood people the right to hear all points of view. For an in-depth discussion and analysis of the ruling, see “The problem with Citizens United is Not Corporate Personhood” by Rob Hager and James Marc Leas.

Further, if the ruling established corporations as person, it also established unions as persons, given that it removed any restrictions on what unions could spend. People on the right are quick to point this out. The Facebook group called Individual Rights and Government Wrongs wrote:

“According to OpenSecrets.org, twelve of the top twenty donors to political campaigns since 1989 are unions. And their donations have overwhelmingly gone to Democrats—only one union donated as much as 10 percent to Republicans, and eight gave less than 5 percent to Republicans. Further, of the top twenty donors, OpenSecrets ranks only one as leaning towards Republicans in their donations. Apparently, donations from unions do not ‘drown out the voices of everyday Americans,’ even though less than 12 percent of the American workforce is unionized.”

The rightwing sees hypocrisy on the left for decrying the ruling without offering any criticism of the influence of unions, which the right feels is as pernicious as what the left fears from corporate influence.

At least one person on the left sees Citizens United as part of an elaborate union-busting scheme. Douglas Webster wrote on Daily Kos, “the next step after Citizens United — giving more freedom to use more money more clandestinely to business and unions — is to launch a full-scale attack on unions…and especially those in the public sector.” Indeed, since the time he wrote that (February 2011), attacks on unions seem to have grown more intense.

This discussion does not answer the question of whether the speech of unions is equivalent with the speech of corporations. I once heard an explanation of why corporations had the right to spend money to exercise their free speech rights that claimed corporate speech was analogous to a group of people pooling their money to buy a megaphone to amplify their voices. My immediate reaction to that claim was that some corporations were using money they got from me to promulgate speech I find highly objectionable. I do not expect corporations to speak for me. I do not want corporations to speak for me. They are not extending my right to free speech.

On the other hand, I join a union precisely because I do want the union to speak on my behalf. When I pay money to a union, I am hoping to amplify my speech to help balance what I perceive to be unfair corporate control of almost all media in the world. If the union begins to express views I find objectionable, I can and will withhold my money. I would like to withhold my money from corporations that express views I find objectionable, and I do withhold most of it from such corporations, but, like you, I buy products and services from people who do not always share my values and views.

So, I do not find the speech of unions and corporations to be equal. I am not saying the activities of unions should not be regulated and monitored, but I do feel our obligation to regulate corporations is greater. In either case, I believe spending on elections should be disclosed. Transparency promotes more ethical behavior generally, and I cannot think of an instance where transparency would harm the function of democracy when it comes to financing elections. If you can think of exceptions, please let me know.

What is the value of ethics courses?

R. Horton

New students in my ethics classes are often either pleasantly surprised or disappointed to learn that I will not be teaching them which behaviors are ethical and which are unethical. Some of my colleagues in other disciplines also seem to think I should tell people how to behave; when they see someone behaving badly, they will say, “That person needs to take your class.” I hate to disappoint, but my classes probably won’t make your unethical students and colleagues do what you want. My only hope is that it will help the ethical ones (and most people strive to be ethical) analyze their own behavior and ethical dilemmas more deeply and constructively.

Several people have told me it is impossible to teach ethics (they’ve said the same of logic and even philosophy in general). I was generally baffled by their statement until I had a slightly more in-depth discussion with a European while I was teaching in China. Rather than simply saying it is impossible to teach ethics, he specified that it is impossible to teach Chinese students ethics. When I asked him why, he said it was because they have no framework to understand ethical concepts. With a little more discussion, it became clear to me that he thought only Christians could understand ethics and morality. I’m happy to report that Chinese students (some are Christian and some are not) are quite competent to explore ethical theory and application. I am confident that students in every part of the world have the same ability.

I don’t teach ethical codes of conduct; my focus is on meta-ethics, ethical theory. I can think of nothing more horrifying than to have my students go out into the world and declare some action unethical with no more evidence than the fact that I said it was unethical. In fact, I would not want them to arbitrarily follow any code of ethics without any idea of why something might be either good or bad. Would you want to find out that someone didn’t steal from you or kill you only because it is in some code of ethics? (Blog that is soon to come: What is the purpose of an institutional ethics committee?)

What I hope I can teach my students, instead, is how others have analyzed what it means to be a good person or what it means for an action to be good. By doing so I hope my students can better understand their own methods for analyzing whether an action or a person is good or bad. As it happens, I don’t teach any courses in a field where it is important for students to remember a particular code of ethics (psychotherapy, for example), but even in such courses, I would hope instructors would help students understand the process of ethical analysis, rather than merely memorizing normative pronouncements. A useful education in ethics will demand that students examine their own ethical beliefs and the customs of their society with both openness and critical scrutiny. It is the only way moral progress is possible.

Glenn Beck is shocked by bioethics blog about an article saying killing isn’t really wrong.

R. Horton

By now, commentary on Glenn Beck seems superfluous—his views are so patently divorced from reality, but this topic could use some discussion anyway. In this clip, he responds to a blog titled “Is it morally wrong to take a life? Not really, say bioethicists” by Michael Cook. Beck seems unaware that his comments are actually about an article titled “What Makes Killing Wrong?” by Walter Sinnott-Armstrong and Franklin G. Miller in the Journal of Medical Ethics. Cook, of course, is just commenting on the original article. Although the full article by Sinnott-Armstrong and Miller is available online, Beck obviously did not take the time to read it. Or, if he read it, he certainly does not want his listeners to.

Here’s the problem: Hospital Ethics Committees (or other hospital entities) must develop extremely precise procedures for organ harvesting. They do this because they do not believe it is ethical to kill patients for their organs, nor do they want others to believe, rightly or wrongly, that they kill patients for their organs. Sometimes, when someone is dying from an extreme and irreversible injury (such as a gunshot wound to the head), doctors will begin to remove organs only to have a monitor show a heartbeat or two. This event can be disconcerting.

I can see three alternatives here: 1. Turn off the monitors and declare the patient dead (changing the definition of death, if necessary). 2. Wait till there is no chance the heart may beat again and risk losing organs that could save another life. 3. Declare that the patient is alive but that killing the patient is acceptable.

Most ethicists have tended to suggest some variation of the first two options, but Sinnott-Armstrong and Miller think it is more honest to accept the third. If the heart may still beat, they argue that the patient is not dead but that it is morally permissible to kill that patient. The authors also make it more challenging by imagining a patient in this state for an extended time (on a ventilator or other artificial life support).

Unfortunately, their term for a patient in this state is “universally and totally disabled,” meaning that the patient cannot suffer, feel, think, or have any other function associated with being a living human being. Beck seizes on the term “disabled” and suggests they want to kill all the disabled people in the world. Is Beck being dishonest or did he just miss the point? Does it matter to you?

The final issue for Beck is that the authors said mere life is not sacred or we would not be able to pull weeds without violating the sanctity of life. So, Beck and his followers are incensed that they authors compared human life to weeds. But, of course, they did not.

No, Sinnott-Armstrong and Miller went on to distinguish between the sanctity of “life” and of “human life.” They follow the weed comment with this explanation:

 “Of course, what people mean when they say ‘Don’t kill’ is ‘Don’t kill humans’ (or maybe ‘Don’t kill sentient animals’). But why then are humans (or sentient animals) singled out for moral protection? The natural answer is that humans (and sentient animals) have greater abilities than plants, and those abilities give human lives more value. Humans can think and make decisions as well as feel (an ability that they share with sentient animals). But if these abilities are what make it immoral to kill humans (but not weeds), then what really matters is the loss of ability when humans (but not weeds) are killed. And then the view that human life is sacred does not conflict with—and might even depend on—the view that what makes life sacred (if it is) is ability, so the basic moral rule is not ‘Don’t kill’ but is instead ‘Don’t disable’.”

To be sure, the article in the Journal of Medical Ethics is provocative, and articles in ethics journals should be provocative. Many bioethicists, doctors, and lay people will disagree that killing is ever acceptable. Discussion of this issue is needed and welcome. Distortions, flag waving, and hysteria are not.