Developing: Congressional Committee Moves to Block D.C. Assisted Suicide Law

The Washington Post reports that a House committee has voted to block Washington, D.C.’s assisted suicide law from going into effect. In order for the law to be blocked completely, however, the full House and Senate will have to vote, and will have to do so by Friday because of a 30-day oversight window.

It is at this point unclear whether that will happen.

You may recall that we named Washington, D.C. a loser in last year’s roundup of winners and losers over this very measure. But perhaps that course can yet be reversed.

We remain firm in our conviction that permitting doctors to assist in the suicides of dying people is wrong and is a form of abandonment. The proper and compassionate approach to suicidal desire—whatever its cause—is compassionate intervention and prevention, not facilitation.

As a reminder, our documentary short film on the effects of physician assisted suicide legalization remains free to view online.

We will continue to monitor this closely, and bring you any updates as we receive them.

Update: A number of disability rights organizations have released a statement in the wake of this committee vote. It reads in part:

When assisted suicide is legal, it’s the cheapest treatment available—an attractive option in our profit-driven healthcare system. Terminal diagnoses and prognoses are too often wrong, leading people to lose good years of their lives. If one doctor says “no,” people can “doctor shop” for that “yes.” No psychological evaluation is required, putting depressed people in danger.

The highly touted “safeguards” turn out to be truly hollow, with no real enforcement or investigation authority. Assisted suicide is a prescription for abuse: an heir or abusive caregiver can steer someone towards assisted suicide, witness the request, pick up the lethal dose, and in the end, even administer the drug—no witnesses are required at the death, so who would know? Many other pressures exist that can cause people with compromised health to hasten their death. Evidence appears to show that assisted suicide laws also lead to suicide contagion, driving up the general suicide rate. We all already have the right to good pain relief, including palliative sedation if dying in pain.

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We are Most Certainly Not Being Careful

The New York Times recently ran an article on ways in which various technologies are being developed and tested with senior adults. The article talks about how aging can be isolating and lonely, and the fact that a shortage of caregivers is looming as the baby boom generation ages. These are among the reasons why researchers are developing technologies that allow seniors to connect with others, that assist them with daily tasks, and that even provide (or substitute for) companionship.

The article leaves out, however, any sense that there are questions to be asked about such companionship technologies, that there might be a need to evaluate how they fit into any larger notion of human flourishing. In fact, the article seems to take the development of these technologies as an unmitigated good: problem, technological solution, done.

What I’m trying to get at is a sense of what true human flourishing looks like as we age. What role is appropriate for technology to play in that? What is required of each of us with respect to our elders? Isn’t at least worth asking whether, by developing some of these technologies that mimic or substitute for companionship, we are simply abandoning people (to put it in rather stark terms)?

Someone who has raised and considered these questions is Sherry Turkle, the Director of MIT’s Initiative on Technology and Self. As a psychologist, she has done a great deal of study on the role of technology in our lives, and particularly on the role of technology as (substitute) companionship for the elderly.

Consider, for example, this summary of her book Alone Together: Why We Expect More from Technology and Less from Each Other, which comes from a review of her later book Reclaiming Conversation: The Power of Talk in a Digital Age:

Turkle’s previous book, “Alone ­Together,” was a damning report on human relationships in the digital age. By observing people’s interactions with robots, and by interviewing them about their computers and phones, she charted the ways in which new technologies render older values obsolete. When we replace human caregivers with robots, or talking with texting, we begin by arguing that the replacements are “better than nothing” but end up considering them “better than anything” — cleaner, less risky, less demanding. Paralleling this shift is a growing preference for the virtual over the real. Robots don’t care about people, but Turkle’s subjects were shockingly quick to settle for the feeling of being cared for and, similarly, to prefer the sense of community that social media deliver, because it comes without the hazards and commitments of a real-world community. In her interviews, again and again, Turkle observed a deep disappointment with human beings, who are flawed and forgetful, needy and unpredictable, in ways that machines are wired not to be.

Notably, Turkle is not quoted or even mentioned in the NYT article. When I tweeted about this absence this morning, the author of the NYT piece replied asking why it didn’t count that she had quoted Joseph Coughlin, director of the AgeLab at MIT. It’s not that it did or did not count, but rather that neither he nor anyone else in this article is raising these kinds of issues about the use and place of technology in or for companionship or caring.

These issues are essential to our thinking about how it is we best care for one another. And that is what the discipline of bioethics is ultimately about—how do we best care for one another, particularly in the face of disease and suffering, conditions that often accompany aging.

Yes, it can be difficult and awkward and unpredictable and even painful to care for one another—and, I would add, to allow ourselves to be cared for by others. But sometimes part of being human is doing things that are difficult and awkward and unpredictable and even painful. And when we hand that over to—or pass it off on—technology, we may just be handing over something that is in fact vital to true and full human flourishing, if we are not careful.

And we are most certainly not being careful about what we hand over to technology.

What role is appropriate for technology to play in the ways in which we care for one another? What is required of each of us with respect to each other? Are we allowing technology to substitute for human interaction in ways that are ultimately unhelpful and/or even unhealthy?

Similar questions about the place of technology in the larger scheme of life are also at stake in debates over human-animal hybrid or chimeric embryos, which I wrote about yesterday.

These are not easy questions, and I don’t pretend that there are easy answers. But they are questions that deserve to be asked, to be considered, to be held up the light of day and examined.

 

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Breaking News: “Scientists create a part-human, part-pig embryo”

The Washington Post is reporting that scientists have for the first time created an embryo that is part human and part pig. The long-term goal is to provide organs for transplant, given that the need for organs always runs well ahead of the availability of organs.

Such a hybrid or chimeric embryo raises many, many ethical issues issues. But notice the ethical justification is given is simply, “this may produce benefits.”

But Vardit Ravitsky, a bioethicist at the University of Montreal’s School of Public Health, said that the two studies published this week could help make a case for further human-animal chimera research by demonstrating the field’s potential benefits.

There is so much more to be considered in the realm of bioethics—on this or any other issue—than simply whether this might produce benefits.

In fact, if your ethical starting point is benefits, then your ethics has already gone off course. On this issue, there are deep questions about what it means to be human and what it means to be a non-human animal. What limits are appropriate in separating one from the other, and why? What is unique and distinctive, what deserves to be protected, and why? To frame it another way, in pressing ahead with this kind of research, are we giving up or violating something about our very humanity, about, as we often say, our shared human future?

And this is, as I say, only the beginning.

This is breaking news and we will be looking into and following it carefully. Stay tuned.

UPDATE

Neuroscientist and animal advocate Dr. Lori Marino comes at the issue from an angle slightly different than mine, but comes to a similar conclusion. From “We’ve created human-pig chimeras — but we haven’t weighed the ethics:”

The possibilities have many researchers giddy with excitement. But they also raise serious ethical dilemmas about the moral status of these part-human animals. Chimera test subjects must be human enough to serve as effective models for health research, but not so human that they qualify for protection from this research altogether.

We all want to alleviate human suffering. But the need does not dictate the solution.

Exactly so.

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To Be Human can be Really Hard

Last week I wrote about the Massachusetts Medical Society’s plans to survey their members, part of which involved a debate over the terms medical aid in dying” vs. “physician-assisted suicide.” As part of that discussion, one Massachusetts physician emphasized the need to highlight the growth and development of the field of palliative care in any discussion of end-of-life treatment.

Almost as if to take up that admonition, The New York Times Magazine recently ran a lengthy profile piece of Dr. B.J. Miller, a palliative care physician at “a small, quirky hospice in San Francisco,” the Zen Hospice Project.

Dr. Miller’s personal story of becoming a tripple amputee during his college years informs his views on suffering and his approach to patient treatment. The article relays Dr. Miller’s story, the story of the Zen Hospice Project, and the story of Randy Sloan, a 27 year-old man diagnosed with terminal cancer.

As I say, it’s a lengthy piece, so there are a number of items I could draw out of it. But I’d like to share with you a few things that have been on my mind since I read it.

The key questions on which Dr. Miller and Zen Hospice focus are: “What is a good death? How do you judge? In the end, what matters?”

Indeed. We each, individually, have thoughts on what the answers to these questions are. Increasingly, we are seeing the ideas of autonomy and control dominating the conversations around end-of-life issues, particularly in political debates over the legalization of physician-assisted suicide. Combined with the emphasis on autonomy and control is the idea that suffering must be avoided or eliminated. Thus, physician-assisted suicide is held out as the solution: assert autonomy, maintain control, avoid suffering.

As the name indicates, the Zen Hospice Project is influenced by Buddhist views, which include the idea that suffering is a part of life.

There’s an emphasis on accepting suffering, on not getting tripped up by one’s own discomfort around it.

Miller is not Buddhist, but in the midst of his experience of losing parts of three limbs, he arrived at a similar perspective:

Miller refused, for example, to let himself believe that his life was extra difficult now, only uniquely difficult, as all lives are. He resolved to think of his suffering as simply a “variation on a theme we all deal with — to be human is really hard,” he says . . . Don’t we all treat suffering as a disruption to existence, instead of an inevitable part of it? He wondered what would happen if you could “reincorporate your version of reality, of normalcy, to accommodate suffering.” As a disabled person, he was getting all kinds of signals that he was different and separated from everyone else. But he worked hard to see himself as merely sitting somewhere on a continuum between the man on his deathbed and the woman who misplaced her car keys, to let his accident heighten his connectedness to others, instead of isolating him.

In the end, here is what I wonder: How can those of us who agree with Dr. Miller that “to be human is really hard,” better stand against the increasingly popular view that to be human is to be autonomous, to be in control, and thus to avoid suffering?

I am not saying that autonomy and control are not important or do not have their place. I am saying that they need to be balanced against other parts of our lives, and should not be pursued as ultimate goals. We need to maintain a realistic perspective that yes, suffering does disrupt our sense of control and it may rob us of some of our autonomy. Proper palliative care recognizes this, and seeks to allow patients to maintain as much autonomy and control as possible without falling into the view that all suffering simply must be eliminated.

What is needed is a deep societal change of mind and attitude. How might this come about? For one, we continue to educate people on the dangers of assisted suicide, and on the misplaced priorities that are driving it. And we continue to point to helpful and hopeful resources like palliative care and the Zen Hospice Project.

There is much work ahead. My humble suggestion is that there are pointers toward a helpful and healthy direction in this lenthy NYT Magazine piece.

If you are able, please do set aside time to read it in full.

Image by ajusticenetwork via flickr (CC BY-ND 2.0)

 

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Let’s Call it What it Is

The Boston Globe reports that the Massachusetts Medical Society is planning to conduct a survey of its 25,000 members in order to determine their perspectives on either “medical aid in dying” or “physician-assisted suicide.”

Deciding what to call it seems to be one of the main sticking points.

The doctors even disagreed about what words to use to describe the movement. Supporters preferred to call it “medical aid in dying” and emphasized the protracted suffering of terminally ill patients. But critics prefer the term “physician-assisted suicide,” and they emphasized that doctors are entering a slippery slope if they are allowed to prescribe fatal drugs to hasten a patient’s death.

Dr. Barbara Rockett, a past president of the Massachusetts Medical Society urged her colleagues to wait until the American Medical Association completes its own national survey.

She also said she disapproves of the term “medical aid in dying,” which she thinks attempts to neutralize the profound ethical issues for doctors.

“Let’s call it what it is — physician-assisted suicide,” she said.

But supporters of this option say “suicide” is an emotionally loaded — and inaccurate — term because terminally ill patients who seek this alternative are not suicidal, but want to live.

As a bit of an aside, it is interesting that no particular supporter is named as holding the view that “terminally ill patients who seek this alternative are not suicidal, but want to live,” which is, at best, poorly worded.

Other physicians emphasized the Hippocratic notion of the role of the physician in the practice of medicine.

Dr. Mary Louise Ashur, an internal medicine doctor in Needham who spoke largely against the resolution, said advances in palliative care must be front and center in this debate, and this reflects the medical community’s ongoing compassion toward the dying.

This is absolutely correct. So much of the reporting and writing on end of life issues simply ignores (a) the basic fact that palliative care even exists, and (b) the many advances that have been made in the field. Simply put, there is much that can be done to care for those with terminal illness, to support patients and their caregivers, and to relieve both the pain and the many forms of suffering that accompany the process of dying. Much more could be said on this, but I will save that for another day.

In the end, the survey was approved

The specific questions in the poll — and who will oversee it and how it will be unrolled — have yet to be finalized, said society spokesman Rick Gulla. Meanwhile, both sides are staying in close touch with the medical society to hear details of the survey.

Said Rockett: “How they word this will be important.”

Indeed, indeed. We must talk about this openly and fully if we are to decide well on how to live at the end of life.

With Dr. Rockett, I say, “Let’s call it what it is — physician-assisted suicide.”

See also:
Why the CBC Opposes Assisted Suicide and Euthanasia
3 Things You Should Know About Physician Assisted Suicide

 

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We Don’t Yet Fully Understand all of the Implications

NPR recently ran an article on the latest developments in the area of “three-parent embryos.” Such embryos are being created in an effort to help those who carry a genetic defect in their mitochondrial DNA.

The article is a long and at times technical read, but the upshot is that there is much scientists do not know, much they cannot predict, and yet many are pressing ahead anyway.

The bottom line, according to biologist David Rand of Brown University, who studies mitochondrial genomes, is that when you swap mitochondria, the reaction is “highly unpredictable.”

And that’s why many experts are calling for caution even amid all the excitement following the three-parent Mexico trial — though there is reason to believe they aren’t being heard.

I would go even further than calling for caution. I would call for an immediate and total halt to this experimentation.

Let’s list the ways we know this can — and will — go wrong.

This technique relies on egg donors, and we have done a great deal of work exposing the problems with egg donation.

It creates human embryos for destruction. One proposal expressly calls for only male embryos to be transferred for possible pregnancy, meaning the female embryos would be . . . well, we’re not told. But the options are indefinite frozen storage or destruction.

In this selection process we see the prospect of eugenics, that is, screening to select just the right egg donors, screening to select only the correct embryos.

And these changes will affect not only the embryo and resulting child being created, but also that child’s children, and so on.

Doug Wallace, the head of the Center for Mitochondrial and Epigenomic Medicine at the Children’s Hospital of Philadelphia says that this “could mean a therapy that might change the DNA of tens of thousands, maybe hundreds of thousands, of babies conceived by this method. That would have a real impact on the long-term future of society, Wallace adds, and we don’t yet fully understand all of the implications.”

Let that sink in.

Caution simply is not enough. Primum non nocere. First, do no harm.

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Physician-Assisted Death Destroys Medical Ethics

The editor-in-chief of the Journal of American Physicians and Surgeons, Lawrence Huntoon, M.D., Ph.D., addresses physician assisted suicide in the winter edition of the journal. His goal is to encourage physicians and the medical associations of which they are a part to hold firm to medicine’s Hippocratic roots and continue to oppose assisted suicide measures.

We completely agree. Physician assisted suicide clearly violates the Hippocratic oath, a topic on we have written on before.

Dr. Huntoon goes on to describe the insidious ways in which physician-assisted suicide slowly expands

“Physician-assisted suicide and euthanasia are initially sold to the public as completely voluntary acts of compassion and ‘death with dignity,’” writes Dr. Huntoon, but “once in place, the next step is coercion.”

“The elderly and those suffering from severe debilitating illnesses, who may be depressed and lonely and who may not have the will or the energy to fight back to preserve their lives, are at risk,” Dr. Huntoon warns. “And if experience in other countries with physician-assisted suicide and euthanasia is any indication, those eligible for death-by-physician will expand to include the healthy and the very young as well.”

He is exactly right!

We join Dr. Huntoon in calling on physicians and medical associations to stand firm in complete and total opposition to physician assisted suicide.

See also:
Why the CBC Opposes Assisted Suicide and Euthanasia
3 Things You Should Know About Physician Assisted Suicide

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Holiday Weekend Reading and Watching

Happy New Year! Because New Year’s Day falls on Sunday this year, many will have a three day weekend, so I wanted to gather some resources you might want to read or watch, if you haven’t already.

First, though, here is a quick update on our year-end fundraising efforts: we need to raise $25,000 by the end of 2016, and so far we’ve received $18,000. In the video below, Jennifer gives a fuller update. Please help us close the final $7,000 gap today.

Reading

Here are a number of information sheets and ebooks that might be of interest. We’ve recently updated all of the documents in our “3 Things You Should Know About . . .” series:
3 Things You Should Know About Physician Assisted Suicide
3 Things You Should Know About Third Party Reproduction
3 Things You Should Know About Egg Donation
3 Things You Should Know About Sperm Donation
3 Things You Should Know About Surrogacy

Film has been an essential part of our work over the past several years (more on that below). As we traveled the world screening our films, we had numerous requests for study guide materials to accompany our documentaries and to expand on the issues presented. As part of our #ThinkAgain campaign, we developed Think Again: A Study Guide on the Legal, Medical, and Ethical Questions of Third Party Reproduction. This study guide is intended for a wide audience as we aim to meet the needs of high school groups, university students, law groups, church groups, and any other group interested in the issues of third party reproduction. Most importantly, the study guide is available for FREE in order to maximize distribution and use. You can download it here.

We also have several ebooks available, also FREE of charge. What women don’t know about their eggs can sometimes lead to infertility or even grave illness. Every day, women in America make choices about what to do with their bodies and their futures—and many of them suffer tragedies as a result of the wrong choices. To protect our children, we need to make sure they know the health factors involved in their decisions. Here are Five Things Moms Should Tell Their Daughters about their eggs.

Since we released Breeders: A Subclass of Women?, we’ve been contacted by many women who have served as surrogates. This ebook, My Experience as a Surrogate, contains one woman’s first-person account of her surrogacy experience. While it’s a short read, it’s a powerful and important one. I encourage you to read it.

In 2013, Jennifer interviewed an Egg Donor Recruiter. She contacted us after researching our film Eggsploitation, and agreed to talk about her experience working for 18 years with a leading fertility center in the United States. Click here for An Exclusive Interview with An Egg Donor Recruiter.

After a screening of Breeders: A Subclass of Women?, Jennifer had the opportunity to speak with a surrogate. She gave permission to share her story. It’s a powerful story, and she has something to say to people who are considering surrogacy (either being a surrogate or getting one). It’s a short read, but an important one. An Exclusive Interview with a Surrogate Mother.

Since we first released Eggsploitation, seeking to expose the truth about egg ‘donation,’ we have been contacted by many women who want to share the story of their experience. We gathered these stories together in one place for you to read and share: Egg Donor Stories.

Watching

All six of our films are available to watch online. Anyone up for a binge-watch?

Compassion and Choice DENIED

Compassion and Choice DENIED explores the effects efforts to legalize physician assisted suicide have on those who are living with terminal illness but who do not want “aid in dying.” The film features Stephanie, a wife and mother living with a terminal diagnosis. She has experienced first-hand the dangerous effects of California’s recent legalization of physician assisted suicide.

As she deals with insurance denials of treatment her doctor ordered and changes in the tone of conversations in various support groups, her story highlights the ways in which the difficulty of living with a terminal diagnosis is compounded by the growing cultural acceptance of the notion of assisted suicide. This negatively changes the ways in which people with terminal illnesses are thought of, and the ways in which they think about themselves.

But hers is also a story of hope. Her hope is that if we can change our way of thinking about the process of dying and those who are dying, we will be able to provide the resources people truly need to be supported and well cared for at the end of their lives.

This film is available to watch for FREE, in full via Facebook and YouTube.

For more information visit Compassion and Choice DENIED

Maggie’s Story

Maggie’s Story is an all new documentary short (22 min) that follows one woman’s journey of learning about “helping” others have a child they desperately want, what she discovered in becoming an egg donor, and the consequences that followed. Maggie was told how special she was, but she was never informed of the risks egg donation posed to her own health and well being. She was used repeatedly for others’ gain, but when things turned bad, she was left on her own to navigate tests, treatments, surgeries, and an unknown prognosis.

Watch online at https://vimeo.com/ondemand/maggie

Maggie’s Story is also available on Amazon. For those who are Amazon Prime members, Maggie’s Story is FREE! Others may rent the film for $2.99 or purchase it for $9.99.

For more information visit http://www.cbc-network.org/maggie/

Breeders: A Subclass of Women?

Surrogacy is fast becoming one of the major issues of the 21st century—celebrities and everyday people are increasingly using surrogates to build their families. But the practice is fraught with complex implications for women, children, and families. What is the impact on the women who serve as surrogates and on the children who are born from surrogacy? In what ways might money complicate things? What about altruistic surrogacy done for a family member or close friend? Is surrogacy a beautiful, loving act or does it simply degrade pregnancy to a service and a baby to a product? Can we find a middle ground? Should we even look for one?

Watch online at https://vimeo.com/ondemand/breeders

For more information visit http://breeders.cbc-network.org/

Anonymous Father’s Day

Thousands of donor-conceived people have a deep longing to know who they belong to, where they come from, and who they look like. What is it like to grow up not knowing who your biological father is or if you have any siblings? What is it like to find out that the man you thought was your dad is not your biological father, that your true biological father donated his sperm and is known only by a number? How does it impact your self-perception, the choices you make, and your view of life and the world? Donor-conceived people are demanding answers to these basic questions about their origins, their lives, and their identities.

Watch online at https://vimeo.com/ondemand/anonfathersday

For more information visit http://www.anonymousfathersday.com/

Eggsploitation

The infertility industry in the United States has grown to a multi-billion dollar business. What is its main commodity? Human eggs. Young women all over the world are solicited by ads—via college campus bulletin boards, social media, online classifieds—offering up to $100,000 for their “donated” eggs, to “help make someone’s dream come true.” But who is this egg donor? Is she treated justly? What are the short- and long-term risks to her health? The answers to these questions will disturb you.

Eggsploitation is available on iTunes, Amazon Instant, YouTube, and Google Play

For more information visit http://www.eggsploitation.com/

Lines That Divide

Stem cell research: A potential miracle cure for diseases or a form of biological colonialism? The debate still rages over this controversial science. Supporters argue that it is our moral duty to pursue scientific progress that provides healing hope for humanity. Detractors argue that the ends don’t justify the means in harvesting some human life to save others. This documentary seeks to educate the public on the scientific basics of stem cell research and the moral issues surrounding it as we enter the 21st century.

Watch online at https://vimeo.com/ondemand/ltd

For more information visit http://www.linesthatdivide.com/

Conclusion

All of these resources were developed because of your generosity. As I write, we need to close a $7,000 end-of-year funding gap. Please give today! Help us start 2017 strong. Help us keep making resources like these. Thank you!!

The Center for Bioethics and Culture is a non-profit 501(c)(3) public benefit educational organization. All gifts are tax-deductible.

 

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Frozen Souls

Last week on her personal Facebook account, Jennifer posed the question, “What’s going to be the fall-out from the human social experiment of embryo donation and adoption?”

A healthy discussion followed in the comments to her post. People weighed in to emphasize strong pro-life principles, cautions about lessons that should be learned from the history of adoption, the uniqueness of such a situation in the history of humankind, and more.

This morning Jennifer recorded a Facebook live video to further the discussion of this important but under-reported—and arguably under-considered and under-discussed—topic. In the video she offers four points:

  1. We should stop generating “excess” embryos, stop freezing embryos
  2. There are no perfect solutions to the current situation of 600,000 to 750,000 frozen embryos in the United States
  3. The way embryos are treated under current US law is an uneasy mix of property transfer and adoption
  4. What do we as a society owe frozen embryos?

The full video is about 5 1/2 minutes long. Take some time to watch the video and think about the topic of embryo donation. What are your thoughts? Share them over on our Facebook page!

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A Populist Bioethics Commission?

Our friend Wesley Smith makes some provocative suggestions for President-Elect Trump to establish a “populist bioethics commission.”

The issue is pressing because biomedical technology is way out ahead of our policies:

We are entering Brave New World territory, with potentially momentous impact on culture and the concept of family. Human cloning has, with way too little fanfare, been accomplished. Researchers are on the verge of creating sperm and eggs from skin cells. Efforts are underway to open the door to the creation of “three-parent” embryos. Transhumanists argue in favor of “seizing control of human evolution” and creating a “post-human species.”

The best way in a democracy to work toward better policy is through a well-informed citizenry. While not everyone will agree with all parts of Smith’s proposal, his third point is excellent!

Third, a populist bioethics commission would broaden its focus beyond offering arcane policy guidance. It should also sponsor public presentations and debates, have members appear on radio and television, and make extensive use of social media to engage the public in bioethical controversies and principles. If the people are paying greater attention to the potentially culture-changing issues within the commission’s purview, politicians would have little choice but to follow.

Bioethics is a tremendously important issue that receives far, far too little attention. Kudos to Smith for putting forward this idea.

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