Newsweek recently reported a story about a 51-year-old man, who between 1980 and 1994 donated his sperm twice a week in order to make cash for medical school and to nurture his altruistic desires to help infertile women. Kirk Maxey states, "I loved having kids, and to have these women doomed to wandering around with no family didn't seem right, and it's easy to come up with a semen donation."

Don't get me started.

By his own estimates, this do-gooder, go-to stud figures he's got 400 children in the U.S. But now, some 15 years later, Maxey's conscience is catching up with him. He's seeking to right his wrongs by making his genome publicly available to the Harvard Personal Genome Project, in order for his offspring and their mothers to find him and have access to his genetic information. Of course, he's also blaming the unregulated sperm scattering seed industry for not keeping track of the number of children produced by each donor, and not doing genetic screening and testing to make sure donors and subsequent children are healthy.

Maxey's story illustrates so many of the fertility industry's dark and shady issues:

1. Maxey, an educated medical student, admits to not giving much thought to his actions. So much for being a bright medical student. Just because you are smart, doesn't make you wise.

2. The sperm donation is referred to as "volunteering." This isn't the army, the local library or a soup kitchen. For his volunteerism and donating spirit, Maxey pocketed a steady stream of cash totaling some $29,000.

3. Twice a week for 14 years, he "locked himself in a room with a cup and a sexy magazine" at the suggestion of his first wife, a nurse at the fertility clinic. They are no longer married. One has to wonder the impact of regular indulgences with "sexy magazines," and the negative impact on a marriage.

4. 400 children don't know their father. And if they find him, what kind of relationship is Maxey expecting? What sort of parent relationship is he willing to develop with 400 children? That is a lot of college education, weddings and birthdays to provide for.

5. Notice that only after the damage is done, has he experienced his great-awakening. I've said it before and I'll say it again, IVF is one of the greatest social experiments of our time, with so many casually -- scratch that . . . recklessly -- pursuing reproductive technology as the solution to infertility. How many lives need to be ruined or destroyed for us to wake up? Maxey is just one of thousands of sperm and egg donors who've contributed to this colossal baby-making enterprise.

Oh Brother, Where Art Thou depicts Ulysses Everett McGill (played by George Clooney), a man who desperately wants to reconcile with his estranged wife and be reunited with his children. His wife has plans to remarry to a gentleman whom she claims is bona fide. Even McGill's little daughter accuses her father of not being bona fide, to which he exclaims, I'm the only daddy you got! I'm the paterfamilias! Maxey already has two daughters who have found him through the genome project. One has to ask, is he bona fide? Is he the paterfamilias? Or is he just another deadbeat, sperm-donor dad?

What does it say about a society which permits, no, which condones the use of medicine and technology for the sole purpose of creating human life just to destroy it? It says we are a culture that has morally and tragically lost its way.

My Sister’s Keeper, Jodi Picoult’s 2004 novel,came out on the big screen earlier this year, joining other profoundly bioethical films such as Gattaca (1997; addresses genetic engineering of super humans), Million Dollar Baby (2004; tackles assisted dying), and The Island (2005; deals with the creation of human clones to be spare parts for the wealthy sick), My Sister’s Keeper takes on a real-life issue commonly known as "savior sibling.

A "savior sibling" refers to the creation of a genetically matched human being, in order to be the savior of a sick child in need of a donor. This requires creating human embryos in vitro, which literally means "in glass" (i.e. a test tube), using the egg from the mother and fertilizing the egg with the father’s sperm. Then, using pre-implantation technology, the embryos are tested, and the one deemed genetically compatible is implanted into the mother’s womb in order for the embryo to grow and develop. Once that baby is delivered, the cord blood is often collected because it provides a perfect match for the sick sibling. Later on, bone marrow, blood, or even organs, can also be taken and used for transplantation for the sick sibling.

Savior siblings are already a reality, and the use of such practices in the United States is not prohibited. Adam Nash was the first savior sibling in the U.S. Adam was born in 2000 to rescue his sister Mollie, who was diagnosed with Fanconi’s anemia. Mollie would have otherwise succumbed to death if not for a matched donor. The Nashes created 30 embryos and went through four rounds of in vitro fertilization (IVF) to finally produce Adam, who was the match Mollie needed. Of course, the ethics of the disposition of the 29 other embryos is quite problematic. Adam was chosen, 29 other human lives were not, simply because their DNA was not able to rescue Mollie from a deadly diagnosis.

In Picoult’s story, the film opens with a voice-over narration of Anna Fitzgerald, the savior sibling. Anna describes herself as a "designer baby." Note to self – Beware of euphemisms. Euphemisms are rampant in the world of IVF. Selective reduction refers to a situation in which many embryos are transferred into a mother’s womb, and then if too many of them implant, the physician, (with the parents’ consent), removes the "extra" embryos. Although the removed embryos die because a lethal dose of potassium chloride is injected into the fetal heart, we politely talk about selective reductions. Family balancing, social sex-selection and gender selection are terms used to discuss the use of these technologies to intentionally select your children based on their sex and your preference for a boy or a girl.

Of course, these euphemistic phrases are used to play down the fact that people are ordering -- that is shopping for -- their children purely based on parents’ desires. If you want a boy, you screen the embryos, select the male embryo, and discard the female ones in order to "balance" your family. Heaven forbid we should have unbalanced families! The practice of social sex-selection is banned in Canada, so Canadians who wish to order the sex of their children come to the U.S. Social sex-selection is just another euphemism with deadly ramifications. Healthy babies discarded because they are the wrong sex? Surely these are symptoms of a culture in decline!

Anna Fitzgerald, the self-described designer baby in Picoult’s story -- designer not as in Prada, or Coach, or Gucci, but more or less like a cafeteria-style menu selection -- was designed for the purpose of being the donor for her sister, Kate. Kate, diagnosed as a young child with leukemia, needs a bone marrow transplant, but none are available. Family members are tested, but no one is a match. She is dying and time is running out, so the family’s physician recommends something "off the record." He suggests creating a donor sibling.

In the opening of the film, Anna suggests that while her method of coming into the world is not conventional, since most babies born are unwanted, she at least was a wanted child. But she is wanted as a product; as a medical treatment; as a donor. Actually, the most recent statistics, taken from a study done in 2001, show that overall 49 percent of babies born in the U.S. are from unintended pregnancies. After that report came out, steps were taken to reduce that number to 30 percent by 2010. We shall see how successful the educational efforts have been when the next report comes out. But of course, as all studies of this nature go, the actual statistics break out quite differently when looked at from educational, economic and age categories.

Also, Anna is not quite accurate in her description of how she was made. She suggests that the doctors took the best part of her mom’s DNA and the best part of her dad’s DNA and voila -- the perfect match was made. If we as a society are going to be able to have an earnest conversation on the ethics of creating savior siblings, we must be intellectually honest with the facts and accuracy of the procedure. Embryos -- as in multiple embryos, were created, and then tested, and only the one that would provide the genetic match was brought to term. The other embryos were discarded. As was the case with the Nash family, 30 embryos were created and only Adam was selected. This is high-tech eugenics: being selected only because of your "good" genes or being destined for demise because you had the wrong or "bad" genetic make-up.

From this point on, the film does a good job of addressing some real issues head on, showing the complexity of the ethical realities, while fortunately not leaving the audience with a romanticized "happily ever after" ending.

The film poignantly shows the absolute devastation parents face when told that their child has a dreadful disease that will most likely kill her. There is no sugar coating of the stress that is placed on a marriage or other children in the family, and the strained family dynamics when a child is seriously or chronically ill. That means gut-wrenching decisions, and the constant suggestion that all hope is lost and all you have to grasp for are straws.

The film deals directly with Anna’s life and experience, as she has lived it knowing that she is a product who only exists because someone else desperately needed her -- or parts of her at least.

And here is the heart of the ethical matter at hand. Technology, apart from any ethical or moral compass, has progressed to the point where, for the first time in history, we are able to intentionally create human life and allow it to fully develop solely because we need that life to save another. And perhaps even more worrisome is the reality that other lives were created, and then destroyed because it did not perfectly meet the need of another. Realistically, there could be several embryos which provided the genetic match, but since only one is needed; even embryos which make the cut are discarded. In our desire to relieve suffering, to seek healing and cures, and to avoid death, we have crossed a bright ethical line by seeking to use one human life for the good of another.

Whether we look for moral guidance from our religious texts or to secular historical documents, it is important that we as a society remain rooted in the belief in the inherent dignity of all persons. The U.N. Declaration on Human Rights warns that wherever there is "disregard and contempt for human rights," "barbarous acts" are sure to follow. Surely, the rights of the savior sibling have been denied when from their first breath they are being used as a means to an end. The World Medical Declaration of Helsinki claims that, "the duty of the physician is to promote and safeguard the health of patients." Isn’t there an immediate conflict of interest between the doctor and the patient, not to mention the savior sibling, who has nothing to gain, but perhaps is exposed to medical risk while not even being a patient? Organ donation is perhaps one of the greatest altruistic deeds a person can do. But in organ donation, the gift is freely given. It is never taken, coerced or bought. Creating a savior sibling is a direct violation of the dignity of that person. It treats human life as something to be made, manufactured and used as a commodity.

Early in the film, Anna hires an attorney and announces, "I want to sue my parents for the rights to my own body." From the moment of birth, the savior sibling has been denied the full rights to her own body, and to willingly and freely be her sister’s keeper.

The Center for Bioethics and Culture's first film has been released, "Lines That Divide" 

What's it about:
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.

Find showings calendar here.

Available at these sellers

Reviews:

Lines that Divide is a much needed tool for equipping concerned citizens with a comprehensive view of the science and ethics shaping the stem-cell debate today. The film spotlights the breakthroughs being made by adult stem-cell therapy—breakthroughs which are not receiving equal funding or equal media coverage. All of us who believe in supporting life should see this film and recommend it to others."
    -- Chuck Colson, Founder of Prison Fellowship
        June 30, 2009 BreakPoint Commentary

"I promise this film is not boring, making excellent use of movie clips and celebrity sound bites in combination with graphics and interviews of scientists on both sides of the debate. Covered are not only ethics but women's health as well as media, political and terminology obfuscation."
    -- Jill Stanek, jillstanek.com

"If you are looking for an antidote to the confusion surrounding the science and ethics of embryo stem cell research, Lines that Divide is the movie for you. It cuts through the hype and leaves you with the facts to be able to make informed policy decisions."
    -- John Cusey, former senior staff in the House of Representatives

"Lines That Divide revealed lines of argument against ESCR I hadn't thought of before. Every opponent of ESCR should be informed, every advocate...should think again."
    -- Doug TenNapel, artist, graphic novelist

"If you really want to understand the stem cell debate and what is really at stake, you must see Lines that Divide"
    -- tothesource.org

When Chloe Levine was just 9 months old her parents noticed that she didn’t use her right hand to hold her bottle. Then they noticed she wasn’t crawling and instead chose to bounce herself around using her weaker right leg only as a prop. At 12 months of age, a cat scan revealed her left side of her brain had not developed properly and she was diagnosed with cerebral palsy.

Jenny Levine, Chloe’s mother, had the typical motherly anxiety about having a healthy baby and right before Chloe’s birth, Jenny and her husband Ryan, made the decision to bank Chloe’s cord blood. This decision gave Chloe a second chance on a healthy normal life when they learned of a study taking place at Duke University led by Dr. Joanne Kurtzberg.

Watch this video interview with Chloe’s parents!

Professor Colin McGuckin, a leader in cord blood research for 20 years, will be one of our keynote speakers at our Banking on Life: Cord Blood Stem Cells - the Future of Regenerative Medicine Conference held May 2, 2009, in San Francisco.

Recently, Professor McGuckin left his position at Newcastle University in the United Kingdom, known for embryonic stem cell research, and moved to France to head up the Cell Therapy Research Institute in Lyon where the environment would be more favorable toward his research and he'd be able to focus more on treating and curing people. He's known for growing the first artificial mini-livers from stem cells found in cord blood, demonstrating the regenerative aspect of cord blood research and the future of regenerative medicine.

In the early days of research, cord blood was used to treat mainly leukemia. Today, cord blood is used in treating some 85 different diseases and is curing patients with sickle cell anemia and thalassemia.

McGuckin believes government should not only encourage the collection and banking of cord blood but also put this rich resource to work helping patients. In an interview done on his recent trip to India, while visiting hospitals there, he stated, "My institute in Lyon and Cryo-Save India are talking to Apollo Hospitals and others for a joint training as well as research program. I don't want to wake up after retirement and think all that I did just remained in the lab."

Join us May 2, 2009 at this important conference to:

- Learn from the leaders and experts in the field of cord blood research
- Network with others involved in cord blood banking
- Earn continuing medical credit for doctors and nurses
- Meet patient advocates working for those who will benefit from cord
  blood research and therapies

We must promote banking of cord blood, encourage funding of research using cord blood stem cells and raise awareness of the many diseases where cord blood is helping patients today! So please, join us on May 2, 2009, for Banking on Life: Cord Blood Stem Cells - the Future of Regenerative Medicine. Register now as space is limited.

These days, fertility medicine is being likened to the Wild West and those who practice the "art" of fertility medicine are unhappy when some in their profession are called cowboys. If the shoe (or boot!) fits, wear it. Otherwise you better learn to rope 'em in boys!

When the news broke of the woman who gave birth to eight children — as in octuplets, as in 8-children-all-at-once — the ethical pundits got busy pointing fingers and playing the blame game. And believe me, it looks like there is plenty of blame to go around. This is exactly the kind of story that accentuates the common phrase "ethics is messy" and re-enforces that complex situations should not (and thankfully are not) our starting place for shaping policy and writing laws.

Trying to get to the bottom of this story has been a challenge. Here is what we currently know:

The mother, Nadya Suleman, is a 33-year-old single mother of 14 children. All of her children were created through IVF technology. Her six other children range in age from 2-7. The birth of the octuplets were born out of implanting six embryos. In IVF a single embryo can produce twins. But, details about the fertility doctor and clinic are still unfolding.

Many were quick to jump on the horrible mother bandwagon. She’s single. She lives with her parents in a tiny house. She’s unemployed. She couldn’t be emotionally healthy if she chose to do such a thing. She has six children already!

But these kinds of questions and attitudes make us all horribly uncomfortable. I mean, do we really want to get into developing a list of criteria which constitutes good-mother/bad-mother? How many of us have fallen in love with America’s new TV family "John and Kate Plus 8"? (It’s a TV show that follows the day-to-day lives of John and Kate and their two sets of multiples, twins and sextuplets). Is their story "good" because John has a good job, they live in a nice house and in a nice community? Snarky Kate, while irritating at times, is a super-mom for navigating through and managing such a chaotic household. And the children are just absolutely adorable!

But poor Nadya, the poster mom for bad mothering, has been vilified. And now she seeks to make a profit off her story (and worse, her children) as she is courted by book deals, TV shows and maybe even movie producers? Tsk, tsk. Shame on Nadya!

But hold on a minute. Before we slap a scarlet letter onto Nadya, first things first. What on earth were the fertility clinic and the fertility doctor(s) thinking — or more appropriately, not thinking? As soon as this story broke, fertility experts were doing damage control. Fertility specialists were glowingly pointing to the stellar recommendations and guidelines of the American Society of Reproductive Medicine (ASRM). But sadly they are just that...recommendations and guidelines that have no heft to them and cannot be enforced. Sort of like the phrase "suggested donations" which is just that — a suggestion! These suggestions, recommendations and guidelines can be ignored. Case in point...octuplets!

Dr. James Grifo, a fertility specialist at NYU School of Medicine said, "I don’t think it’s our job to tell them how many babies they’re allowed to have. I am not a policeman for reproduction in the United States. My role is to educate patients." I caught Grifo on the news reiterating his praise of the ASRM guidelines and objecting to laws that would regulate medical practice.

But what has become of the medical profession which is to profess their special knowledge and training in medicine, for the good and the benefit of their patients? In educating their infertile patients they would to well to explain that the human female body is not designed to produce litters. They would do well to avoid putting women and children into harms way by endangering their health by intentionally causing a multiple birth-high-risk pregnancy

If the medical profession would only profess their special knowledge and take their oath seriously we wouldn’t need to police medicine and we wouldn’t have cowboys for doctors.

As was expected, the United Kingdom approved the creation of human-animal hybrids for research. British officials have bought it hook line and sinker . . . they want to maintain their reputation as leaders in stem cell research. And since a strong contingent of organized groups have been successful at slowing down the human egg trade, creating a shortage of human eggs for research, the researchers are moving forward using enucleated animal eggs and adding in human genetic material, typically from a skin cell. Add a small jolt of electricity and Voila! The cybrid is here. Interspecies cloning has occurred.

Prime Minister Gordon Brown said, “these embryos would bring to an end 'the critical limiting factor in stem cell research: the lack of human eggs from which to create embryos and collect stem cells'. They would also bring new cures and treatments to millions of people.”

The bill also backs the creation of “savior siblings”. This means, if you have a sick child who needs a genetic match, you can make embryos in the lab through IVF technology, test them to identify the match, and then implant that embryo in order to save your sick child. Of course, this also means, generally the other embryos are either discarded or donated for research. Perhaps some of you have read Jodi Picoult’s book, My Sister’s Keeper? Chilling what happens when we treat people as means to an end.

And no new law would be complete without either a Hollywood celebrity with an illness or a politician with a sick child or relative beating the desperate drum of Cures, Cures, Cures.

May cool heads prevail as it looks as if we will stop at nothing?

When something is unethical, and the pressure is put on to find an ethical way it forces us to be innovative and creative in finding solutions to our problems. That is the case in the great stem cell debate. Creating embryos for destruction or destroying "surplus" embryos to treat a sick patient is unethical. And because the pressure and debates have not let up, scientists have been busy looking for alternative solutions. And here's another example of ethical scientific progress!

"Scientists have transformed one type of fully developed adult cell directly into another inside a living animal, a startling advance that could lead to cures for a variety of illnesses and sidestep the political and ethical quagmires associated with embryonic stem cell research."

Read these quotes on this breakthrough:

"It's kind of an extreme makeover of a cell," said Douglas A. Melton, co-director of the Harvard Stem Cell Institute, who led the research. "The goal is to create cells that are missing or defective in people. It's very exciting."

And this:

"I see no moral problem in this basic technique," said Richard Doerflinger of the U.S. Conference of Catholic Bishops, a leading opponent of embryonic stems cell research. "This is a 'win-win' situation for medicine and ethics."

And finally this quote:

"I'm stunned," said Robert Lanza, chief scientific officer of Advanced Cell Technology in Worcester, Mass., a developer of stem cell therapies. "It introduces a whole new paradigm for treating disease."

A very exciting, 'win-win', new paradigm for treating disease. All ethical indeed!

Rarely have my own personal and professional experiences ever so cataclysmically collided than during the past Labor Day weekend. And rarely have I ever been so public with my private life than I am about to be. Sure, I've shared some of my own personal stories with you in the past, but I've made a conscious effort to keep my family out of things – much to my husband's and children's relief. But here goes.

The Friday of the Labor Day weekend, I moved my mother to a nursing facility closer to my home. The main reason she and I decided to move her was for more frequent visits and for her to be able to see more of her grandchildren. I left her at 5:00 p.m. on Friday evening and received a call Saturday morning around 5:00 a.m. that she had died late Friday night. Quite frankly, I am still in shock. I was awakened from a deep sleep – my nursing brain not having kicked in – as the physician, who had never even seen my mother, nor had I ever met, went on to give me the brief details of what had transpired since I left my mom awake, alert, and sitting watching her TV. You never know how you will respond to the news of losing a parent. I know the answer to that question now: It is very sad.

But in the days since then, my training as a nurse and my education in dignity for all (not some) has caused me to dig deep, especially since we as a nation are in conversations about how we can fix our broken healthcare delivery system. Certainly, healthcare was not delivered the day I lost my mother. And honestly, my mother was not in need of healthcare. She was in need of medical care. She was sick and she needed a doctor – one who would prescribe medicine and treat her sickness – and not “deliver” healthcare to her. Pizza and mail are delivered. Babies are delivered. Medicine is an art .

This summer, the CBC served as a co-sponsor of a conference on Healthcare and the Common Good . I was privileged to hear many experts speak about our broken healthcare delivery system, our obligations to care and treat the sick, and the proper role of the physician and medicine. One speaker suggested a BHAG , to be sure one that I had never given much thought to and one that is still challenging my thinking. What if we got rid of the middle man? What if we put medicine back in the hands of the physician and allowed him to treat and heal the sick? What if third party groups stopped telling physicians how to treat their patients? What if the government didn't tell physicians how to run their professional practices? How much money would be freed up and how much would costs be driven down, so much so that all people could afford to receive medical care? Isn't it true that the sick need a doctor – and not some big, monolithic, impersonal healthcare delivery system?

Last week we ran Wesley Smith's brilliant piece on “ Killing for Organs .” We at CBC Central have been amazed with our readers' responses to Wesley's piece. Our non-statistical data shows this to be one of our most forwarded pieces. (Don't worry, CBC Big Brother is not watching. We don't know who forwarded it to whom; we just know a lot of you sent this onto someone you know.) And many of you took the time to write to us with your comments and reactions. Again, another non-statistically significant fact, but many of you shared how you'd removed your “little pink dot” from your driver's license. Not because you were against organ donations: you just want to be sure you are good and dead before your organs are removed.

We are reminded of the fragility of life, the dignity of all humans, and the ancient call of the Oath : “I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.”

We all will face crises and be put in positions where tough decisions must be made. Training and education are so important to prepare us for when those times come. I've seen too many people facing challenges that had never given thought to such a circumstance. And times of crisis are not the best time to be getting up-to-speed. The military trains. Firemen prepare. Disaster teams drill. And we must do the same.

When I read Jeff Sheehy's quote in the May 2008 Nature article on “The $3-Billion- Dollar Question”, I knew we were doomed. Sheehy, responding to the megabillion give-away of Prop. 71 funds by the California Institute of Regenerative Medicine (CIRM), asked a simple question: “We're going to make a lot of rich people richer. Why don't we cure somebody?” Good point from Mr. Sheehy, a CIRM insider who serves on the Independent Citizen's Oversight Committee.

Really though, I knew we were duped back in November, 2004, when Californians were sold a bunch of hype under the banner of the “California Stem Cell Research and Cures Act.” It wasn't long after Prop. 71 passed that the ‘Cures for California' mantra quieted and risk management and damage control began with more optimistic and realistic goals being pushed onto unsuspecting voters. We were now being told cures would be hard to come by. Cures could be decades away. H. Rex Greene, out-spoken critic of Prop. 71 and then medical director of the cancer center at Mills-Peninsula Health Services in San Mateo, said, "If this ever leads to cures, it will be decades away -- if ever." We soon learned that our monies would be invested in basic research which, it is hoped, may one day lead to cures. New drug therapy development costs would shift and now be funded by taxpayer dollars that would absorb any risks of failed therapies. But hey, what's a cool $3 billion between friends?

But long forgotten or just plain ignored since that November day is the reality of what the good taxpayers of California voted for. We were voting for “Cures for California,” cures which today are glaringly absent from sight or rarely mentioned. California's voters weren't voting for basic research or for new drug research and development. And Lord knows, we weren't voting for BUILDINGS! From the CBC summary report on CIRM funding allocation generated this summer by our Blackstone Intern, George Davis :

RFA 07-03, also called the Major Facilities Grants, was created by CIRM in order to fund new facilities that are free of any federal funding so as to allow research and development of therapies based on hESCs and other stem cell approaches to proceed in California without restrictions imposed by the federal government. These new facilities will help accommodate researchers receiving individual CIRM grants. This program was open to any non-profit research institution in the state. An institution could apply for a grant in one of the following three categories:

• CIRM Institutes : funding for capital project proposals that support the most comprehensive stem cell research programs that include three elements: 1) basic and discovery research; 2) preclinical research; and 3) preclinical development and clinical research. Grants in this category ranged in amount from $25 million to $50 million.

• CIRM Centers of Excellence : funding for capital project proposals that support broad stem cell research programs that include any two of the three above described research elements. Individual grants of this type will range in amount between $10 million and $25 million.

• CIRM Special Programs : funding for capital project proposals that support specialized stem cell research programs that include any one of the three research elements discussed above. Individual grants of this type will range in amount between $5 million and $10 million.

All told, CIRM to date, has distributed over $262 million in facilities grants to 12 institutions.

There will be cures? No, I think rich people will get richer. And there will be buildings.