Last week, in a story about another baby boy, there was a a beautiful memorial to the “Bubble Boy,” David Vetter, too.
My granddaughter’s mother is one of those heroes, helped by doctors and nurses, my son and an extended family of friends. (I can’t help my prejudice that gives the mother most of the credit.) And then, there was a baby boy and his generous mother.
In addition to a very low white blood cells count, her bone marrow didn’t make enough red blood cells or platelets, either. She’s healthy and well, today, after one of the first cord blood bone marrow transplants in the world at the age of 15 months.
Although no matches were found for Sebastian, the baby in today’s story, Texas has a strong system for the registration of both bone marrow and umbilical cord blood donors. The Texas Cord Blood and MD Anderson Cord Blood Centers collect, store s and manage the distribution of donated cord blood collected at birth from moms and babies all over the State.
Families who store their baby’s cord blood privately are very unlikely to ever need it, except when there’s a known problem. The odds are less than 1:200,000. But if they donate to a public bank, the blood is much more likely to save a life and/or be used in life-saving research.
Bravo to all the parents and caregivers in children’s lives and prayers for Sebastian. There’s a Go-Fund-Me account for Sebastian’s expenses, if you are interested.
Edit: there’s a wonderful update: Sebastian was able to go home!
Bioethicists and transhumanists – and I – have long speculated on the ability and usefulness of drugs to enhance performance. However, assassins, murderers and the subgroup that are the jihadists, have a completely different goal for their “enhancement.”
“Captagon — a synthetic amphetamine-based pill — is considered the drug of choice for Islamic State fighters in Syria, Iraq and, now it seems, Paris.
‘When French police raided a hotel room at Alfortville, south-east of Paris, last week they found a stash of syringes, needles and plastic tubing.” (from http://www.abc.net.au/news/2015-11-24/captagon-the-drug-that-kept-the-paris-attackers-calm/6970464 )
Hat tip to BioEdge
We should at least have as much care for the donation of tissue from aborted human fetuses and embryos as we do for the donation of organs from those killed by capital punishment. Both scenarios involve purposeful intervention to cause death and the collection of tissues, at least, must be carried out by licensed and regulated medical personnel.
Robin Alta Charo (a law and ethics professor at the University of Wisconsin) has an opinion piece in this week’s New England Journal of Medicine, “Fetal Tissue Fallout.” in which she claims that society has a “duty” to use tissues harvested after elective, intentional abortions.
I object to the idea that society has a “duty” to make use of the end products of either procedure. Both scenarios involve purposeful intervention to cause death by licensed and regulated medical personnel, making those of us who vote for the legislators who write laws complicit in the actions, at least remotely. Under a strict philosophy of ethics based on the protection of inalienable rights, each act should be weighed individually and should only be carried out when the one killed is a proven danger to the life or lives of others.
Robin justifies her elevation of the use of fetal tissues after elective abortion to that of a “duty” by citing past benefits of research using fetal tissues. She is more political and names past Republican supporters in an earlier op-ed, published in the Washington Post on August 4th.
Yes, society has benefited from these tissues. However, that picture at the side of this post depicts Dr. Frederick Robbins, one of the scientists who utilized fetal tissue in the 1950’s development of the Salk polio vaccine. Dr. Robbins is depicted smoking at work in the laboratory, while handling test tubes without gloves. We know better than that, now. Isn’t it time that science and medicine researchers catch up with our knowledge that the human fetus is a human being from the moment of fertilization?
Where are the Ethics Review Boards that monitor for the unethical behavior we’re hearing about in the videos from the Center for Medical Progress?
In 2013, the science journal, Nature, published an article covering the history and evolution of informed consent and compensation for donors of human tissues, including the fetal tissue culture, WI-28. Ms. Charo was quoted as supporting monetary compensation:
But, says Charo, “if we continue to debate it entirely in legal terms, it feels like we’re missing the emotional centre of the story”. It could be argued, she says, “that if somebody else is making a fortune off of this, they ought to share the wealth. It’s not a legal judgment. It’s a judgement about morality.”
Yes, “It’s not a legal judgment. It’s a judgement about morality.”
Forty years ago the words “fertilization” and “conception” meant the same thing to doctors, lawyers, and embryologists alike: the joining of the 23 chromosomes in the sperm with the 23 chromosomes in the oocyte (“egg”) to form a new complete, unique human organism. “Contraception” was defined as any method that worked before the existence of the embryo by preventing fertilization. These were the hormonal treatments and devices that prevent ovulation of the egg and condoms, diaphragms and sterilization that serve as “barriers” between the sperm and egg. Drugs and devices that may or may not end the life of the embryo after fertilization were legally and correctly called “abortifacients.”
However, legalized abortion and the ability to accomplish fertilization through in vitro methods led to new legal definitions of “pregnancy” and “conception” as beginning at implantation rather than fertilization. Even in vivo, healthy human embryos in healthy mothers were deprived of legal protection as human beings for at least the first 5 – 10 days of their lives, the window of opportunity for implantation when the developing embryo grows to hundreds of cells organized in 2 or 3 recognizable tissue layers and interact with the mother’s body in ways that may affect the timing of birth or risk of diabetes and other health concerns. Possible abortifacients that work after fertilization but before implantation were redefined as “emergency contraception.”
In spite of what you may have heard on the news, the June 30, 2014 Burwell v. Hobby Lobby decision by the Supreme Court of the United States (SCOTUS) didn’t deny birth control for anyone. Everyone may still purchase his or her own FDA-approved birth control. SCOTUS simply ruled that the government can’t force some employers to buy things that they believe are immoral.
In fact, Hobby Lobby only asked to be exempt from purchasing insurance plans that paid for specific drugs and devices used for “emergency contraception.” Before the passage of the Affordable Care Act (“ObamaCare” or ACA), the company purchased insurance that included true forms of contraception, including,
- Those that prevent ovulation by preventing the normal ups and downs of the hormones estrogen and progesterone, such asBirth-control pills with estrogen and progestin (“Combined Pill”),Birth-control pills with progestin alone (“The Mini Pill”),Birth control pills (extended/continuous use), Contraceptive patches, Contraceptive rings,Progestin injections, andImplantable rods
- Those that act as “barriers” to fertilization by preventing the union of sperm and egg: Male condoms, Female condoms, Diaphragms with spermicide, Sponges with spermicide, Cervical caps with spermicide, Spermicide alone, Vasectomies, Female sterilization surgeries, and Female sterilization implants.
The problem is that regulations written by the Obama Administration mandated that all insurances pay for all pregnancy “preventatives” approved by the FDA, including drugs and devices that may function after fertilization to end the life of the new human embryo:
- Pills that mainly delay ovulation but may impair implantation and development of the placenta if fertilization takes place, such as over-the-counter Plan B and generic levonorgestrel tablets, and ella, which requires a prescription, and
- Devices that mechanically and hormonally make the uterus inhospitable to implantation by the embryo, such as intrauterine devices like the copper-T, Mirena, and ParaGuard. These are inserted up to 5 days after unprotected intercourse to prevent implantation and then left in place to prevent fertilization and implantation for as long as 5-10 years.
Although the words we use do not change the fact that the human embryo is the same human life before implantation as after, they can change his or her legal status.
The latest wins came this month, when the Office of Personnel Management announced that government-contracted health insurers could start covering the cost of gender reassignment surgeries for federal employees, retirees and their survivors, ending a 40-year prohibition. Two weeks earlier, a decades-old rule preventing Medicare from financing such procedures was overturned within the Department of Health and Human Services.
Unlike Obama’s support for same-sex marriage and lifting the “don’t ask, don’t tell” ban on openly gay troops, the White House’s work to promote transgender rights has happened mostly out of the spotlight.
Some advances have gone unnoticed because they also benefited the much larger gay, lesbian and bisexual communities. That was the case Monday when the White House announced that Obama plans to sign an executive order banning federal contractors from discriminating against employees on the basis of their sexual orientation or gender identity.
In other instances, transgender rights groups and the administration have agreed on a low-key approach, both to skirt resistance and to send the message that changes are not a big deal, said Barbara Siperstein, who in 2009 became the first transgender person elected to the Democratic National Committee.
A machine lays down the titanium for the false hip, dot by dot, line by line as with a printer. In addition, the docs used the woman’s bone marrow stem cells to aide in healing.
In the Abolition of Man, C.S. Lewis notes that, “When all that says ‘it is good’ has been debunked, what says ‘I want’ remains.”
Last week, the New England Journal of Medicine published a “Perspectives” column, “Life or Death for the Dead Donor’s Rule?,” in which the authors illustrate Lewis’ point with their redefinition of non-maleficence to better serve a re-defined autonomy.
They would convince us that there is no harm in hastening the death of a dying patient even by intentionally causing it if he or his surrogates ask. They ignore a 2500 year old First Principle of Medical ethics,focused on the health of the patient in front of us: “Cure when possible, but first do no harm, ”
Autonomy, like all rights, is a negative right: the patient has the right to refuse invasive medical interventions that will harm him or that he does not want. Patients and surrogates, if they can compel the use of medical skills and invasive technology, can only do so for the medical benefit of the patient himself.
Illogically, in these times of reducing costs, the authors would have us consider taking a patient from the ICU to the OR “and then take him back to where life support would be withdrawn.” The return to the ICU is nothing but our own “medical charade.”
I want to thank Nancy Valko, who runs an email list covering a range of traditional ethics issues, her email alerting me to this editorial.
A real-life, real medicine tale of the risk that doctors face – and are willing to face – when taking care of our patients under arbitrary and often outdated Medicare regulations. It will only get worse under ObamaCare and the IRS.
He was a slender-framed man, mid- to late-sixties, with a kind of ridden-hard-put-away-wet complexion. It was clear the years had not always been good to him, but being the kind soul that he was, he had plenty of friends. It was a beautiful summer day to spend with friends for a barbecue, but he arrived feeling puzzled why he collapsed at home earlier in the day.
He stopped at the keg and poured himself a beer in a red solo cup, and as he approached his friends with a smile, he did it again, this time which such gusto that his beer went flying and the thud he made when he hit the ground made everyone gasp. He laid motionless for a moment face down on the ground while his friends rushed to his aid. An ambulance was summoned as others rolled him over onto his back. He began to move – slowly at first – then more purposefully. As sirens approached, he asked his friends, “What just happened?’
Read the rest of the story here.
The author’s comments:
It is becoming abundantly clear that conflicts between the [sanctity] of human life will confront the government’s unwillingness to pay for procedures. No where is this more clear than with approval of payment for the implantation of an ICD, which might run in excess of $200K for the procedure at some instituions. As a result, doctors who strive to provide state-of-the-art care to their patients will continue to confront similar ethical dilemmas that risk their legal standing (and credentials) as they care for their sickest arrhythmia patients.
By publishing this case scenario, my hope was to draw attention to these ethical dilemmas that are becoming increasingly prevalent in medicine as a result of these outdated, inconsistent, and incomplete coverage decisions, guidelines for care, and “appropriateness use” criteria. Further, the potential for legal action against physicians y imposes real fear for do
ctors if they stray at all from these outdated decisions. This fear is to the point where it might do actual harm – and even cause death – to patients who are left without appropriate treatment as a result.
Texas Alliance for Life has posted the video of the speech given in the Texas House of Representatives by Representative Jason Villalba (District 114, Dallas) in favor of life and HB2. It’s a beautiful testimony to love and humanity, and an answer to all the claims that this Bill is simply a political ploy. Watch for the sonogram picture of the Villalba’s 13 week son and the Representative’s declaration that he will fight for his son and all the babies destroyed by elective abortion.
If we can still believe scientific journals, Cell reports in the June 6, 2013 issue indicate that scientists have succeeded in cloning human embryos.
The term used for cloning by the group is “reprogramming” fibroblasts using somatic cell nuclear transplantation. However, there’s no longer an attempt by the authors or members of the scientific press to create a new “unfertilized blastocyst” or pre-embryo: the embryos are called embryos, morula, and blastocysts.In recognition that these are not quite the same as embryonic stem cells derived from embryos produced by direct fertilization, the stem cells derived from the cloned blastocysts are designated as “Nuclear Transfer Embryonic Stem Cells” or NT-ESC.
Tachibana’s group obtained well over a 100 oocytes from women who underwent ovarian stimulation and transvaginal retrieval.
The growth of four embryos to the blastocyst stage resulted in NT-ESC, after differentiation into a blastocyst with a trophoblast (precursor of the placenta) and the inner cell mass (the part that will develops into the actual body of the human). These embryos were destroyed to harvest the ICM.
The report details years of research to find the optimum technique for cloning human embryos. It was found that the mitotic stage of the oocytes, MII, is critical. The researchers further developed a protocol utilizing caffeine and electrical stimulation to induce activation of the fused nucleus from the skin cell and donor oocyte. In addition, the authors found that “higher quality oocytes,” those more likely to form viable embryos, resulted when the ovarian stimulation yielded fewer than ten oocytes. If larger numbers of oocytes were produced due to the ovarian stimulation, somatic cell nuclear transfer was less likely. In fact, the first four clones that developed far enough to produce NT-ESC came from one woman who donated eight oocytes in one cycle, resulting in the production of five cloned embryos.
There are several ethical problems which surround this research.
First, as strongly noted by the Center for Bioethics and Culture, the ovarian stimulation risks abuse of women who might be placed at risk due to the hormones administered to induce ovulation. As noted in the paper,
“In the context of generating patient-specific pluripotent stem cells, reproducible results with various patient-derived somatic cells and with different egg donors are a necessity.”
Although the donation is called voluntary and anonymous, the women were compensated for their “time, effort, discomfort, and inconvenience associated with the donation process.” I can’t help but wonder about how long the anonymity will last for the one woman whose oocytes yielded those first four successful clones and NT-ESCs or for the two women whose oocytes yielded the clones confirming the reproducibility of their method, in the second stage of the research. Or how much pressure they will face to continue to donate “voluntarily.”
The lack of concern for the women involved is revealed in this interview with the authors at The Scientist,
““I was worried that we might need a couple of thousand eggs to make all these optimizations, to find that winning combination. But it actually took just 128 [eggs], which is a surprisingly low number to make 6 [hESC] lines.””
6 NT-ESC lines were derived from 128 harvested oocytes, for a yield of 4.6% In later stages, the success rate was still 2 NT-ESC lines from 7 embryos and 15 oocytes, or 13% of oocytes.
The primary objection is that 100% of the human embryos were created in harm’s way and must be destroyed to harvest the NT-ESCs.
These embryos are delayed human twins, artificially induced. Although the first cell of these embryos began in the lab, as the result of highly technical and involved procedures, they are human embryos and near-identical twins of the somatic cell nucleus. There is indirect acknowledgement that the embryos are twins of the donor of the fibroblasts by the reporting that tests of the chromosomes of the cloned embryos show that the DNA matches that of the donor of the fibroblasts, a patient with Leigh’s syndrome.
The sources of fibroblast nuclei raise other ethical dilemmas. The first research was carried out using female fetal fibroblasts. Later research involved creating human embryos with Leigh’s syndrome. Leigh’s syndrome results from a genetic defect of the mitochondria, the cell “power plant,” which is inherited from the mother and only found in the cell cytoplasm, not the nucleus. Reports are already ignoring the fact that the donor’s twins were produced with the express intention of destroying them for their inner cell mass. At least one is predicting that this is a technique which can be used to create future children for mothers who have the abnormal mitochondria.
The report, Tachibana et al., “Human Embryonic Stem Cells Derived by Somatic Cell Nuclear Transfer,” Cell (2013),http://dx.doi.org/10.1016/j.cell.2013.05.006, is available on-line and in PDF (as of today).
If there’s no such thing as right and wrong or good and evil, why are we arguing in the first place?
If you crack the egg of a bird on the Endangered Species List, it won’t matter that the bird was a fetus or embryo. You’ve still broken Federal law. Why is the species of an (unhatched) animal so clear cut under law, but human embryos have no protection under current law? Legal follies such as this underscore our lack of seriousness and consistency when contemplating our children of tomorrow. My concern is that we are not teaching them why they should treat us kindly, much less giving them a good example.
Bioethics dilemmas and most political disputes may seem to be new problems, but they’re not. Every “new” problem is another facet of the potential to deny the existence of right and wrong or to infringe on the inalienable rights of our fellow humans. Knowledge of the basics can guide decisions and actions.
If there’s no such thing as right and wrong or good and evil, why are we arguing in the first place? These truths transcend relative social considerations and laws, including religious beliefs, ideology, or the wants and wishes of the powerful or majority. They even transcend time and space: if you take a close look at the big debates, the speakers aren’t simply talking to each other: we’re arguing with the great thinkers of the past and trying to convince people who come along after us.
The unique nature of the species Homo sapiens sapiens is the source and the definition of “human dignity,” and the reason that all members of the species and our offspring are human beings who should be valued equally, without discrimination.
And of course, we are unique, since It looks like we’re the only species having this conversation. We’re the only species that, when an individual has safety, food and sex, doesn’t just go to sleep. Our species makes art, records history, and argues about the nature of the universe. Humans seem to naturally “know” “that’s not fair,” even at 3 or 4 years old. We seek Unconditional Justice, Truth, Love, Beauty and Knowledge. And we value Unconditional Love most of all.
The Negative rights to Life, Liberty and Property are owned and endowed upon individuals; they are not the property of or gift of societies or governments. These exist in a necessary order; a hierarchy of importance and power to call on society for protection. The right not to be killed trumps the right not to be enslaved, which precedes the right not to have your property taken from you by force or fraud. If they can kill you, there are no limits on how much they can enslave you or take from you. We must be secure that others won’t take our property against our will, because earning and owning property is how we avoid enslavement to others and how we make plans and lay by the staples of life to support the lives of ourselves and our families, both immediately while we can earn, and later when we are unable to work.
Society and government must protect these “inalienable” rights of individuals, but only as far as to ensure equality of opportunity, not the equality of outcome. These are protections against the actions of others, not against words or thoughts. It is not protection or promotion of someone’s personal tastes and not the right to not be offended. We must be very, very careful when we tax and even more careful if we presume to force the actions of others.
Good politics and science cannot exist in a moral vacuum. The powerful, the majority, the surging mob. the man with the biggest gun or governments cannot do good when their actions infringe on the life, liberty or property of the individual. To claim that people must act or give up property indefinitely for the greater good – Utilitarianism – ends in domination without measurable or objective limits.
And yet, to function in society carries responsibilities. Extraordinary privileges like those given to lawmakers, doctors, and scientists to do good, may also result in extraordinary power to do evil through abuse of unequal power of weapons, tools, numbers or even knowledge and skill. This is where conscience and the first principle of “first do no harm” come in. The right of conscience is a function of the liberty of an individual not to be forced to act against his understanding of good and evil, right and wrong.
Medicine and science have held a unique position to advocate for the protection of human rights, at least since Hippocrates, who formalized the now 2500 year old oath to “heal when possible, but First, do no harm” Non-maleficence, or not acting in order to avoid harm, must precede and be incorporated in the desire to do good or beneficence.
Once again, we come back to that first point: all of our offspring, descendants deserve the same value and protection of their rights to life, liberty and property without discrimination. It’s possible that we already have offspring among us who are not of our species. Science has created human embryos with more than two biological parents and others who have been the subject of genetic manipulation. Also out there are is the Humanity+ or Transhumanism movement in all its permutations, along with more accessible enhancement of the human mind and body through technology, medicine, machines, and manipulation at the nano-level.
We must consider how our children of tomorrow will consider us. It is true that humans aren’t perfect, we will make mistakes, and some humans will purposefully infringe on the rights of others. However, what values and principles will the pattern of our governments and individual action reflect? Will it be our respect and love for one another? Will they respect and love us or will they look back in horror or disgust?
(I want to thank Robert Spitzer, who wrote “Healing the Culture,” one of the best Ethics books in existence.)
This is a March, 2011 post from LifeEthics. org. Why Ethics? | LifeEthics. Edited 5/10/13 to move to top of the list.
Using words such as “egregious,” “cynical,” “outrageous,” and “deceive,” the Texas Catholic Bishops Conference have published the letter that they sent to Texas Legislators concerning the actions of Texas Right to Life concerning Senate Bill 303 and its companion, House Bill 1444 on April 15, 2013.
Since employees and representatives of TRL continue to “stoke fear through ridiculous claims,” (and to harass those who support the Bills) here’s the letter (I’ve reproduced the emphasis is in the original):
The Texas Catholic Conference is compelled to publicly correct the misstatements and fabrications that continue to be perpetuated by the Texas Right to Life organization against legislation to improve end-of-life care by reforming the Texas Advance Directives Act.
It has been said that all is fair in love, war and Texas politics. However, the actions of Texas Right to Life have been so egregious and cynical, especially when comes to misrepresenting the moral and theological doctrine of the Catholic Church, that the TCC cannot stay silent.
Texas’ Advance Directives Act needs reform. Current law lacks clarity given the complexity of end-of-life care, contains definitions that could permit the withdrawal of care for patients – including food and water – and permits unilateral Do Not Resuscitate Orders without the permission of, or even consultation with, the family.
Senate Bill 303 and House Bill 1444 are based on Catholic moral principles and reasonable medical standards for defending human life and protecting the conscience of both families and physicians. Both billsprevent unilateral DNRs, improve communication between medical providers and families, ensure a clear and balanced process for resolving differences, and give families the right to challenge Do Not Resuscitate Orders before a medical ethics committee.
In both its materials and communications with legislative offices and staff, Texas Right to Life has tried to stoke fear through ridiculous claims of nonexistent “death panels” and assertions that doctors are “secretly trying to kill patients.” Both claims are absurd. The truth is, many factors are involved in the sausage-grinding process of public policymaking. Some have less to do with making good laws and more about individual personalities and fundraising opportunities of organizations.
It is outrageous that an organization purportedly committed to the rights and dignity of life would resort to such disingenuous tactics that deceive honest and caring people. What is worse is doing so in a way that perpetuates current law and may cause unnecessary patient suffering.
Texas Right to Life has no authority to articulate Catholic moral teaching, and certainly does not have permission to represent the views of the Roman Catholic Bishops of Texas. If you have any questions, please feel free to contact us at the Texas Catholic Conference. We are more than happy to answer any questions or provide the Texas Catholic Bishops’ position on any issue before the Legislature.
(Edited for spelling and grammar, 4/25/13 BBN)
Great news from Australia!
“In 2011 no genital wart diagnoses were made among 235 women under 21 years of age who reported prior human papillomavirus vaccination,” the authors noted. “The significant declines in the proportion of young women found to have genital warts and the absence of genital warts in vaccinated women in 2011 suggests that the human papillomavirus vaccine has high efficacy outside the trial setting. Large declines in diagnoses of genital warts in heterosexual men are probably due to herd immunity.”The study provided a glimpse of the impact of HPV vaccination in a real-world community setting as opposed to a clinical trial.
6:05/8:18 Farrar: “So, so, this diagnosis is missed, they
have a fetal anomaly, the spine’s outside the body or something, you say you would not have an exception for that situation.”
Watch the video at 6:05 (See below ++) of the April 10, 2013 Texas House State Affairs Committee meeting hearing on HB 2364, by Representative Jodi Laubenberg, as State Representative Jessica Farrar challenges a practicing OB/Gyn about his belief that abortion should not be performed when babies are found to have non-lethal “anomalies” after 20 weeks post-fertilization (or 22 weeks since last period).
I wonder how of you have heard of the trial of abortionist Kermit Gosnell* in Philadelphia, Pennsylvania? Most people, whether pro-choice or pro-life, are horrified by the way Dr. Gosnell and his staff treated the babies they delivered both alive and dead.
We also squirm at the intentional killing of children who could otherwise live.
The limit of viability for the unborn, using current medical technology, is 20 to 23 weeks gestation. There have been reports of survivors born before this time. Who will be surprised when the limit moves even farther back? What will history say about us?
In fact, here in Texas, we have made it clear with our Prenatal Protection Act of 2003, spurred on by the deaths of Lacy and Connor Peterson, that our definition of individual (or person) includes all humans from fertilization to natural death.
*(Gosnell is accused of killing the babies who survive, of committing abortions after the legal age limit, and of mutilating the bodies of the babies after they were dead. One gruesome account is here.)
The Committee Substitute was passed this afternoon with 9 yes votes in the House State Affairs Committee. The Chairman of the Committee, Byron Cook voted “yes,” after assuring the Committee that the Bill (which is not available online or in the Committee) will not outlaw human cloning at Universities.
Voting “no” were four brave Republicans – I’ll list them all as soon as I can verify and make sure I don’t miss anyone. Unfortunately, some of our conservative members weren’t present. I will also name them when I can do so without missing anyone.
I worked with Representative Raymond’s office to come up with good definitions, but I don’t know how much of those definitions made it into the final Bill.
Luckily, in spite of the lies we’ve read over the years, no one has yet been able to clone a human embryo.
What is now encouraged is the purposeful creation of a human embryo by cloning. The embryo may never be implanted, but the Bill declares that the nascent human should be killed and broken up
Laws relating to ethics debates are generally behind medical advances. This is good because it means that there *are* medical advances.
However, the debates often become emotional and heated, and the individuals who are affected face real dilemmas and emergencies. When law-making is controversial, it’s best to go back to the basics of ethics for guidance: the inalienable rights to “Life, Liberty and the Pursuit of Happiness,” the Declaration of Independence, and Constitution.
All laws limit our rights, but good laws strike a balance between seemingly conflicting rights: they are meant to prevent one person from harming another. Most laws prohibit or punish harmful actions, they don’t *compel* a desired action against our will. Nor do they prohibit actions based on thoughts and opinion. In other words, laws prohibit harming or taking from another, but they usually don’t make you protect, nurture or give to another.
However,since the right to life trumps the right to liberty and property, there are very rare circumstances when it is appropriate for laws to compel individuals to act for the benefit of another. Parents are required to care for and protect their minor children. Doctors and lawyers must be licensed, obtain certain levels of education, and follow specific, positive actions when they wish to withdraw from a professional relationship with a patient or client. These laws should only go so far as to protect the life and safety of the vulnerable, for a limited time with the goal of allowing safe transfer of the obligation of the person with more power to someone else.
On Tuesday, March 19, 2013, the Texas Senate Health and Human Services Committee, under Chair Senator Jane Nelson, heard testimony on two Bills that would change TADA: SB 303 from Senator (Dr.) Bob Duell’s and SB 675 by Senator Kelly Hancock.
The Texas Advance Directive Act of 1999 (TADA), in addition to describing “Advance Directives to Physicians” (a “Living Will), was an attempt to outline the procedure for resolving the disagreement between a doctor and patients or their surrogates regarding end of life care.
When I first read the Act, I (naively) thought it was malpractice protection for doctors who did not want to withdraw or withhold care, such as the Houston Methodist Hospital doctors who invoked the act when they repaired Dr. Michael Debakey’s aortic aneurysm against his previously stated wishes – http://www.theheart.org/article/762619.do – in 2006.
Most of the time, however, TADA is invoked in cases when the attending physician disagrees with a request to actively administer medical treatment that he or she believes is medically inappropriate. The steps laid out in the law involve the doctor’s notification of the patient or the surrogate, rules for assisting with transfer of care to another doctor who believes the treatment request is appropriate, and convening an ethics committee at the hospital. If there is no other willing doctor can be found and the ethics committee agrees with the doctor, the treatment can be withheld or withdrawn. It does not allow patients to be killed by medicines.
Unfortunately, the Act has become known as the “Texas Futile Care Law,” and divides even the pro-life community. One side says doctors and hospitals have too much power and are killing people. While I’ve heard horror stories about doctors who have abused or broken the law, I maintain that there is no “Futile Care Law,” only a difference of opinion as to who should decide what is medically appropriate treatment. In the few cases that have come under the Act, patients and their advocates report trouble finding other doctors willing to provide the treatment the first doctor thought was inappropriate. In my opinion, that difficulty is due to physicians’ common education and shared experiences.
Although TADA lays out requirements for hospitals and hospital medical ethics committees, the fact is that it applies to the “attending physician” who could be forced to act against his conscience. Texas law is clear that only doctors may practice medicine by diagnosing and treating patients directly or “ordering” other medical personnel. These treatments are not one-time events and they aren’t without consequences. They are interventions that must be monitored by observation and tests, and adjustments need to be made so that the treatment is effective and not harmful. Medical judgment is how doctors utilize our education, experience, and consciences as we plan and anticipate the effect of each medical intervention.
Senator Duell’s Bill, SB 303, significantly improves TADA. Among other things, the Bill would add protection of the patient’s right to artificially administered hydration and nutrition, increased access to assistance, records, and time before and after the ethics committee meeting, and prohibits so-called “secret DNR’s.”
Senator Hancock’s Bill, SB 675, focuses on the intentions and motives of the doctor, requiring the medical committee to decide whether the disagreement is due to: “(1) the lesser value the physician, facility, or professional places on extending the life of an elderly, disabled, or terminally ill patient compared to the value of extending the life of a patient who is younger, not disabled, or not terminally ill; or “(2) a disagreement between the physician, facility, or professional and the patient, or the person authorized to make a treatment decision for the patient under Section 166.039, over the greater weight the patient or person places on extending the patient ’s life above the risk of disability.”
Our laws normally prohibit actions and only very rarely compel people to act. Under the conditions laid out in SB 303, the doctor can be forced to act against his conscience and best medical judgment, but only for a limited, stated time. SB 303 improves the Texas Advance Directive Act by protecting the patient’s access to artificially administered hydration and nutrition. It also adds time to prepare for the ethics committee meeting and to transfer care a new doctor. It is an attempt to balance the patient’s wishes for medical intervention with the right of conscience of the doctor. In contrast, SB 675 would attempt to legislate intentions or thoughts, with none of the added protections of SB 303.
Edited 4/27/13 to fix the link to the article about Dr. Debakey and 4/30/13 for grammar and formatting – BBN.
Non-destructive induced Pluripotent Stem Cells used to test new drugs:
Rubin works mostly with iPSCs, derived from real patients. If his lab can develop drugs that they can identify in a screen as candidates that might be useful, they can test them across ranges of patients –many individual patients.
“And that can pretty much only be done, practically speaking, using an iPSC approach,” he said.
“So, as an example, we discovered a compound, something we were excited about for ALS. Kevin Eggan (also at HSCI) and I collaborated to test that compound on 60 different motor neurons in parallel, using a very interesting technology we developed in my lab from live cell imaging which was required.”
What would you do?
Last month, a proposal to establish a U.S. Special Operations Command (SOCOM) Center for Excellence in Operational Neuroscience at Yale University died a not-so-quiet death. The broad goal of “operational neuroscience” is to use research on the human brain and nervous system to protect and give tactical advantage to U.S. warfighters in the field. Crucial questions remain unanswered about the proposed center’s mission and the unusual circumstances surrounding its demise. But just as importantly, this episode brings much needed attention to the morally fraught and murky terrain where partnerships between university researchers and national security agencies lie.
Hat Tip to James J. Hughes and the Institute for Emerging Ethics and Technology newsletter
I testified in front of the Texas House State Affairs Committee on Tuesday. The video is here, House State Affairs 2/20/13 (Free RealPlayer program required.) Mr. Raymond comes up at about 3:30 minutes in, and my effort starts at 8 minutes in. It’s short and sweet.)
HB 142, authored by Representative Richard Raymond of Texas’ House District 42 in Laredo, looks a lot like his HB 1829 from 2007. These are “clone and kill bills, which nominally ban cloning, but actually redefine cloning, and would force the killing of any human embryo intentionally killed by nuclear transplantation. HB 142 ignores the history of the last 6 years, and uses inaccurate terminology.
Watch this space for alternative language that would actually ban human cloning.
The Texas Institute for Health Care Quality and Efficiency Draft Report is posted for public comment.
You only have a day and a half to comment, since the next meeting of our Board of Directors is Thursday, November 15th. All comments should be sent by 1 PM on Wednesday, November 14th.
Instructions on submitting your comments are here.
Now, for a few comments on my observations as a Board member:
Believe it or not, the time frame from the passage of the legislation in SB 7 last June, 2011, to today and in anticipation of preparing for legislation beginning in January, 2013, is too tight. The Institute’s staff and coordinators did a good job of herding cats in the Board. In addition, the Board members worked hard to make all the meetings, to participate, and to contribute. We have met at least once a month, sometimes more than twice, since our appointment. The Board isn’t paid or even reimbursed for expenses by the State, and many gave up work in order to attend meetings far from their homes.
I haven’t commented on the draft until now, because the Board received our first full copy for review and comment on November 2, and comments were due by 5 PM, Election Day, November 6th. We’re all appointed by the Governor — it stands to reason that a few of us would be actively involved in the election and campaigns. I didn’t even open the email until Nov. 7.
I’m not happy with the length of the report, but I guess the nuances of our discussions over the last few months needed to be documented somewhere. Go to the page 34 in the pdf, numbered “26” in the Draft, for the actual recommendations made by vote in the Board meetings.
Finally, my main concern has been with the bureaucracy and regulation that the members of the Board have sometimes appeared to support. In the end, I believe that we have limited recommendations for regulation and “hassle factors” more than some would like. My hope is that the Legislature will decide to focus initially on implementing any new measures in our own State health plans and not interfere directly in private health care practice and systems, except where and when the State foots the bill.
Since President Obama won reelection, I believe that the ability of the 83rd Texas Legislature to adapt and react to Federal Regulations – Obamacare – will be improved by the work of the Institute.
Robin Alta Charo, the lawyer/ethicist-for-hire, one time Clinton advisor turned Obama transition advisor then FDA consultant, has been appointed to 2 new positions at the National Institutes of Health.
In her new role, Charo will advise on ethical and regulatory issues raised by translational research, such as privacy and civil rights concerns raised by research using human tissues residing in large biobanks or public health implications of deploying genetics and personalized medicine to target drug development toward narrower segments of the population. She will also participate in overseeing the peer review process for research proposals submitted to NCATS.
Ms. Charo, the inventor of the “Endarkenment,” supports sex-selection abortion, believes cloning will finally prove there’s no God, and frequently writes op-eds for the New England Journal of Medicine, specializing in her opposition to conscience rights. She likens Medicine to a “public utility, obligated to provide service to all who seek it. Claiming an unfettered right to personal autonomy while holding monopolistic control over a public good constitutes an abuse of the public trust — all the worse if it is not in fact a personal act of conscience but, rather, an attempt at cultural conquest.”
It often seems that we fight increasing de-volition of traditional human and medical ethics with new technological advances. Here’s evidence that sometimes ethics and the understanding of human dignity can or could advance.
hat would an artificial womb mean? Well,according to this futurist,
In immediate terms, the foundations on which a woman’s rights to choose are predicated in Roe v. Wade, namely the issue of fetal viability and the right to privacy (the right not to be pregnant), will be rendered virtually meaningless. First, once a fetus can be safely and entirely gestated outside of a biological womb, it can be removed from its mother. Second, ectogenesis means that viability starts with conception.
(by Soraya Chemaly, original at RH Reality Check)
I’m reminded of a science fiction story about the need to duplicate the normal intrauterine environment that I read in the 80’s, which ended with the advice, “Use original container.”
However, would we say that or the equivalent to a recipient of a heart or kidney transplant? Or even a diabetes patient?
The interesting argument, here, is that the extra uterine *individual* is recognized as a human being, a being with his or her own humanity.
This is an exciting advance in promoting healing of spinal cord injuries. There are no stem cells – ethical or destructive – involved. This is a new technique using micro-surgery and chemicals to influence healing.
UT neurobiology professor George Bittner, the lead researcher, has spent much of the past 40 years working on solutions to nerve damage. He has come up with a method that had paralyzed rats moving their legs within minutes of treatment and walking within days.
“We are very excited and very optimistic,” said Dr. Wesley Thayer, one of Bittner’s collaborators and an assistant professor of plastic and reconstructive surgery at Vanderbilt University. He said that he expects human trials on the technique within a year.
Trials using the method on the spinal cords of rats are under way at Wayne State University School of Medicine in Detroit.
Bittner’s research focuses on newly injured peripheral nerves — the ones outside the brain or spinal cord. When a peripheral nerve is severed by a deep cut or injury, the broken ends begin to close off and seal. But Bittner has developed a technique to interrupt that natural healing process. By using microsurgery and readily available chemicals, including polyethylene glycol, he has been able to keep the nerve endings open and fuse them back together.
“If you completely sever a nerve, the odds of getting anything like full function … are 20 to 30 percent,” said Bittner, 70. “What we have done is solve that problem for rats.”
Bittner also has tested the technique in other animals, including guinea pigs and rabbits, with the same positive results, he said.
This month, Bittner and his team published two articles online in the Journal of Neuroscience Research involving rats who had their sciatic nerve severed. The nerve begins in the lower back and runs down the leg. Within one to seven days, the rats had a dramatic recovery of the functioning of their legs, according to the research.
That improvement persisted over time, Bittner said.
“Just because we don’t regenerate doesn’t mean that we can’t regenerate. It just means that we don’t.”
Public Broadcasting System’s PBS NewsHour had a segment on regenerative medicine, reviewing the very impressive progress we’ve made in the last few years. The mere fact that PBS and scientists will state these facts in public is almost as huge, in terms of world view change, as the fact that the matrices plus stem cells work.
I was at a American Bioethics and Humanities annual convention when Yamanaka’s induced pluripotent cells first made the news. The Powers That Be for that group were angry and refused to allow any hopeful conversation that the iPSC’s would replace the need for research on destructive, embryonic stem cells. Damage control included scolding world authority figures *on* the panels for daring to bring up the subject in any serious way.
I’m convinced that the whole embryonic stem cell mess was more about the need to prove that abortion is wonderful and that there is no Creator. In fact, that’s exactly what one of the Clinton/Obama “bioethicists,” Robin Alta Charo, said about cloning in at least one meeting I attended in July, 2006. (More, here.)
Ms. Charo who introduces morality and her anti-religion bias into the conversation, by making it a matter of personal opinion whether or not embryonic humans are humans. The species of human embryos is a matter of taxonomy, since it’s scientifically documented and verifiable that the offspring of a given species are members of that species. Discrimination between the amount of protection given to some members of a species is much more a “religious” or moral decision than whether or not a given individual is a member of that species.
I’ve said it many times before, but: Break the egg of a bird, turtle, or lizard on the Endangered species list and it won’t matter that the animal couldn’t survive or was an embryo or fetus. The Feds know that an embryonic pelican is a pelican. We don’t have the same protection for our own children of tomorrow that we give lesser species, although we are the only species having the conversation in the first place.
Transhumanism is a field composed of many interesting mind games (pun intended) but the really great title of this Scientific American review of Connectome, a new book by Sebastian Seung on cutting edge neuroscience, the state of the science behind the Human Brain Project and the transhumanist religion that is adopting it, is what made me post tonight.
Can you remember the last update of the operating system software on your phone or the browser you’re using to read this note? Or did you buy a Windows 7 computer only to find that your year-old wireless printer was not supported? Or – horrors! – have you, like me, found that your entire computer system is no longer “compliant” and won’t be supported by your vendor after a change in Federal law?
If you have a smartphone and have installed “apps,” how many of them are due an update? That software will completely replace your old program which will be removed from your phone’s memory.
Now, just imagine that your consciousness, your whole brain full of connections and thoughts, a program that, according to a certain group of transhumanists, will think, feel and essentially be you.
The idea is to dispose of the fallible human body that inevitably degrades and dies for a program that will live forever.
My experience with technology is that it, too, decays, degrades or comes with bugs and glitches that require constant upgrades with code that may be worse than a human malignancy. And that security programs can themselves be as bad as the hacks and viruses they’re supposed to protect me from.
I don’t know about you, but I’m not going to beta this one.
This is a wonderful story. I’m very glad for the Representative and for all the patients who receive their own stem cells and have good results. (My granddaughter, at 15 months old in 2001, received an anonymous little boy’s umbilical cord blood after her bone marrow completely failed. More here.)
Someday, I believe we’ll find the stimulating factors that make the body’s stem cells activate the way we want them. In the meantime, this is what our researchers – and Legislators – are finding out about ethical adult stem cells (not destructive embryonic stem cells.:
State Rep. Rick Hardcastle, R-Vernon, participated in a recent round of autologous adult stem cell treatments to help his multiple sclerosis, similar to what Gov. Rick Perry had done in July.
Although the stem cells are not embryonic, doctors in the U.S. are still skeptical of the procedure because it is not yet approved by the Food and Drug Administration.
Adult stem cells are taken from the patient’s fat, sent to a lab where they are developed, then reintroduced to the patient via intravenous therapy.
The treatments are used to treat patients with autoimmune diseases such as multiple sclerosis, fibromyalgia, Crohn’s disease, Parkinson’s and chronic obstructive pulmonary disease.
Hardcastle was diagnosed with MS almost 10 years ago and repeatedly said the treatments worked phenomenally for him.
“I’m walking on water and near bulletproof,” Hardcastle said from a casino in Las Vegas, where he was with his wife for the National Finals Rodeo. “Since I had the third treatment, I have fished in the river in Alaska. I have walked up and down stairs without having to hold onto the handrail like a goon. It’s just been phenomenal so far.”
Hardcastle said just having his balance is an amazing thing because since he was diagnosed, his balance was one of the first things to go. He spoke at length about how easily he was able to walk the stairs at the Las Vegas event.
“Eight years ago, I was having to literally … stop to step over a concrete barrier on a parking curb. I just walk across it now like I did 20 years ago,” he said.
Universal Truth at work again. I would have loved to be there in order to watch heads explode and hear the susurus of “Did he say that?” buzzing around the room.
Newer and safer forms of stem cell therapy will likely overtake research into the use of human embryonic stem cells, the scientist whose team cloned Dolly the sheep told his peers at a stem cell conference in La Jolla.
Direct “reprogramming” of adult cells into the type needed for therapy is gradually becoming a reality, Ian Wilmut told an audience of several hundred at the Salk Institute at the annual Stem Cell Meeting on the Mesa. Such a feat was once thought impossible, but in recent years it has been demonstrated in at least two publications, he said.
But it’s been unclear which types of stem cells would prove most useful: the “adult” kind that have a more limited potential to change, or the embryonic kind. The emergence of direct reprogramming provides a promising new option scientists should consider, Wilmut said.
“I’m not quite sure why this hasn’t been pursued more actively,” Wilmut said.
It is difficult to achieve purity in embryonic and induced pluripotent stem cells because they are prone to forming tumors.
Direct reprogramming of cells from one type to the other avoids that danger, because the cells never enter the pluripotent stage to begin with, Wilmut said.
Direct cell reprogramming didn’t exist when California voters approved the stem cell program in 2004 with the passage of Proposition 71. That program was mainly aimed at funding embryonic stem cell research the federal government wouldn’t fund.
However, the program can also fund research with other types of stem cells, such as “adult” cells from umbilical cord blood.
The use and value of embryonic stem cells is an intensely controversial issue.
Many people object to their use because human embryos, which they consider human individuals, are killed to get the cells. Critics also point to the success of adult cells in approved therapies, while no therapy with embryonic stem cells has yet been approved.
Only one treatment with embryonic stem cells is in clinical testing in people. And that company, Geron Corp., recently ended its involvement in what was described as a business decision.
“”Siri is doing exactly what it was built to do—provide answers to questions like, “Where can I get an abortion?” using its own algorithms and the online resources it has available to craft answers.
“”Consider the current kerfuffle. This is simplifying things a bit, but the gist of this story is that Siri is getting hung up on a word, “abortion,” because organizations that actually offer abortion services tend not to use the word as much as anti-abortion organizations do. So when Siri goes looking for where to get an “abortion” in the digital wordscape of the Internet, lo and behold, it returns addresses for Crisis Pregnancy Centers rather than Planned Parenthood.””
Just one more failed “stimulus” project? This past week, Geron announced they are no longer pursuing their research in embryonic stem cells. They laid off 66 employees.
The US government should never have been in the business of picking and choosing business winners and losers. We certainly shouldn’t be giving money for destructive embryonic stem cell research.
Included as part of the Patient Protection and Affordable Care Act of 2010, the QTDP program provided a tax credit to encourage investments in new therapies to prevent, diagnose, and treat acute and chronic diseases. Companies, such as Geron, that cannot currently use a tax credit were allowed to apply for a cash grant
in lieu of a tax credit.
To be eligible for the program, projects must show reasonable potential to result in new therapies to treat areas of unmet medical need; prevent, detect, or treat chronic or acute disease and conditions; reduce long-term health care costs in the United States; or significantly advance the goal of curing cancer within a 30-year period.
In addition, preference was given to projects that showed the greatest potential to create and sustain (directly or indirectly) high quality, high-paying jobs in the United States, and advance United States competitiveness in the fields of life, biological, and medical sciences.
Projects were selected jointly by the Treasury Department and the Department of Health and Human Services.
Geron is getting out of the business of doing Embryonic Stem cell research. Trust me, if there were any objective truth to the idea that destructive Embryonic Stem cells could make money, the Corp. would stay in.
Earlier this week, the Geron Corporation announced it was abandoning its research into using embryonic stem cells to treat spinal cord injury. Geron was the first company to get the green light from the FDA to conduct clinical trials using embryonic stem cells. That was way back in 2009. And now, citing, quote, “capital scarcity and uncertain economic conditions,” the company is looking to sell off that part of its business and focus on other work.