Weighing the ethics of Parental rights as modified by multiparent conception......and its further implications

After reading this Article: a few times I want to address the ideology behind "Intent to procreate".
This concept in and of itself if used with any regularity could put a whole spin on a number of legal and ethical issues. 

• If a man and a woman have sex and the mother wants a child and intends to procreate and the man does not, does that limit his rights? Does it alleviate his obligation in paternity and support? The questions go to either side of the gender divide.
• Does intent of creation really have more bearing than facilitation of the child going from embryo to fully developed human?

Lets take a different angle:

• If parent A planned a child out of the conception, and parent B did not does that give parent A an exclusive or dominant edge if parents disagree about the medical treatment for a child?
  
• What if neither person planned the child but a third party intervened in such a way as to try to make a child a possibility between those 2 people. Does that give the 3rd party a right?

This also opens the option of basically co-opting source genetic code due to an intent to conceive on the part of a genetic engineer.
If we base things on intent at the time of conception we may be looking at a far more slippery slope than we ever intended.

Bioethics and the Olympics

Our colleague Elizabeth Reis asks: Is intersex a disorder or a competitive advantage? The International Olympic Committee (IOC) is implicitly considering this question as they explicitly grapple with how to handle athletes who have an intersex condition, a discrepancy between genitals, internal sex anatomy (ovaries or testes), hormones, and chromosomes. Intersex bodies have always aroused suspicion on and off the playing field. Now they are under scrutiny again as doctors and sports officials debate whether some naturally occurring factors, like an unusually high level of testosterone, would give certain female athletes an unfair edge over other women in sporting events. You can read more about this issue here.

Elizabeth Reis is the author of Bodies in Doubt: An American History of Intersex (Johns Hopkins University Press, 2009). She is associate professor of women’s and gender studies and history at the University of Oregon in Eugene.

DIY Synthetic Biology - More Than Building a Better Tomato

A few years in his book, A Many-Colored Glass, Freeman Dyson envisioned that the domestication of biotechnology would result in a new art form, as creative as painting or sculpture and would give rise to an explosion of new diverse creatures, few of which will be masterpieces, but “all will bring joy to their creators and variety to our flora and fauna.”  Now, college biology students are competing to see who can create new, living tools to address the planet's problems (e.g., bacteria that   The comments and reactions to the article range from go-get-'em to we-are-destroying-ourselves-and-the planet to philosophical:

Sample comment 1: 

Genetic engineering by experienced professionals is dangerous enough.

Genetic engineering by students is a spectacularly bad idea.

Sample comment 2:

Mary Shelley's Frankenstein remains a compelling story these many years later  because of its description of what it means to be human, and what happens when we overreach. We can't bury our heads in the sand, we can't put the genie back in the bottle, but perhaps we can ask the question, "Should we do it just because we can do it?"

Sample comment 3:


lots of pluses and minuses here - 
Plus: poor countries can home brew their own genetically engineered crops and not have to rely on multinationals and their morally odious "patenting" of genetic  sequences (many of which started as novel genetic strains they freely took from poor countries).

Minus: Al Qaeda can brew its own deadly flu strain. Possibly killing many poor Muslims would not be a problem for Al Qaeda.


Welcome to the age of genetic hacking. Just like computer hacking, except we're the vector, not our computer.

Sample comment 4:  [I suspect a bioethicist wrote this one]


Any technology can be used to accomplish useful things, or abused to accomplish evil things. The fault lies with personal ethics, not the technology itself. Our students are carefully versed in the implications of biotechnology as well as the applications and limitations.  It is important to expose students to ethical considerations in the use of technology. Our students are far more informed on these issues than the general public.

Regardless of your position on whether or DIY genetic engineering kits are a good idea, this article does provide evidence that the field of bioethics is not dying or irrelevant; if anything, it is now needed more than ever.

HeLa Cells and The Immortal Life of Henrietta Lacks

I had the pleasure of being one of the fact-checkers and proof reviewers on Rebecca Skloot's book, The Immortal Life of Henrietta Lacks, and I'm pleased to see that it is now on the NY Times Bestseller list and that Rebecca is well into her book tour.   Rebecca retells the story of Henrietta Lacks and her family and masterfully weaves it into compelling story, that rivets your attention and illustrates just how far we've come in and how far yet we have to go in human subject experimentation.   Here is a short excerpt to whet your appetite:

[On January 29, 1951, David Lacks sat behind the wheel of his old Buick, watching the rain fall. He was parked under a towering oak tree outside Johns Hopkins Hospital with three of his children—two still in diapers—waiting for their mother, Henrietta. A few minutes earlier she'd jumped out of the car, pulled her jacket over her head, and scurried into the hospital, past the "colored" bathroom, the only one she was allowed to use. In the next building, under an elegant domed copper roof, a ten-and-a-half-foot marble statue of Jesus stood, arms spread wide, holding court over what was once the main entrance of Hopkins. No one in Henrietta's family ever saw a Hopkins doctor without visiting the Jesus statue, laying flowers at his feet, saying a prayer, and rubbing his big toe for good luck. But that day Henrietta didn't stop.

She went straight to the waiting room of the gynecology clinic, a wide-open space, empty but for rows of long, straight-backed benches that looked like church pews.

"I got a knot on my womb," she told the receptionist. "The doctor need to have a look."

For more than a year Henrietta had been telling her closest girlfriends that something didn't feel right. One night after dinner, she sat on her bed with her cousins Margaret and Sadie and told them, "I got a knot inside me."

"A what?" Sadie asked.

"A knot," she said. "It hurt somethin' awful—when that man want to get with me, Sweet Jesus aren't them but some pains."

When sex first started hurting, she thought it had something to do with baby Deborah, who she'd just given birth to a few weeks earlier, or the bad blood David sometimes brought home after nights with other women—the kind doctors treated with shots of penicillin and heavy metals.

About a week after telling her cousins she thought something was wrong, at the age of 29, Henrietta turned up pregnant with Joe, her fifth child. Sadie and Margaret told Henrietta that the pain probably had something to do with a baby after all. But Henrietta still said no.

"It was there before the baby," she told them. "It's somethin' else."

They all stopped talking about the knot, and no one told Henrietta's husband anything about it. Then, four and a half months after baby Joseph was born, Henrietta went to the bathroom and found blood spotting her underwear when it wasn't her time of the month.

She filled her bathtub, lowered herself into the warm water, and slowly spread her legs. With the door closed to her children, husband, and cousins, Henrietta slid a finger inside herself and rubbed it across her cervix until she found what she somehow knew she'd find: a hard lump, deep inside, as though someone had lodged a marble the size of her pinkie tip just to the left of the opening to her womb.

Henrietta climbed out of the bathtub, dried herself off, and dressed. Then she told her husband, "You better take me to the doctor. I'm bleeding and it ain't my time."

Her local doctor took one look inside her, saw the lump, and figured it was a sore from syphilis. But the lump tested negative for syphilis, so he told Henrietta she'd better go to the Johns Hopkins gynecology clinic.

The public wards at Hopkins were filled with patients, most of them black and unable to pay their medical bills. David drove Henrietta nearly 20 miles to get there, not because they preferred it, but because it was the only major hospital for miles that treated black patients. This was the era of Jim Crow—when black people showed up at white-only hospitals, the staff was likely to send them away, even if it meant they might die in the parking lot.

When the nurse called Henrietta from the waiting room, she led her through a single door to a colored-only exam room—one in a long row of rooms divided by clear glass walls that let nurses see from one to the next. Henrietta undressed, wrapped herself in a starched white hospital gown, and lay down on a wooden exam table, waiting for Howard Jones, the gynecologist on duty. When Jones walked into the room, Henrietta told him about the lump. Before examining her, he flipped through her chart:

Breathing difficult since childhood due to recurrent throat infections and deviated septum in patient's nose. Physician recommended surgical repair. Patient declined. Patient had one toothache for nearly five years. Only anxiety is oldest daughter who is epileptic and can't talk. Happy household. Well nourished, cooperative. Unexplained vaginal bleeding and blood in urine during last two pregnancies; physician recommended sickle cell test. Patient declined. Been with husband since age 14 and has no liking for sexual intercourse. Patient has asymptomatic neurosyphilis but canceled syphilis treatments, said she felt fine. Two months prior to current visit, after delivery of fifth child, patient had significant blood in urine. Tests showed areas of increased cellular activity in the cervix. Physician recommended diagnostics and referred to specialist for ruling out infection or cancer. Patient canceled appointment.]


To read more excerpt, click here.  You can also hear Terry Gross interview Rebecca about her book here on NPR.

 
From issues in medical paternalism to the dark history of experimentation on African Americans and legal and ethical battles over whether or not we control the stuff we are made of (as in the Moore vs California Bd of Regents case, which is a thorn in the side of most bioethicists I know), this book rocks! 
I'm recommending it for the WBP Summer Book Club!

Samantha Burton's Ordeal at Tallahassee Memorial Hospital

Well, Tallahassee Memorial Hospital is at it again – that is, forcing a pregnant woman to undergo medical treatment against her will.

You might remember the case of Pemberton v. Tallahassee Regional Medical Center (now Tallahassee Memorial Hospital), in which Laura Pemberton was forcibly taken from her home in active labor, put in an ambulance, taken to the hospital, and made to undergo a court-ordered cesarean.  Ms. Pemberton’s “crime”? She was trying to have a VBAC at home, attended by a midwife after no physician would attend her at the hospital.  While in labor, she went to the hospital for some IV fluids.  The doctor refused to give her the fluids, and insisted that she get a cesarean. She returned home. The hospital obtained the court order to return her back to the hospital and have a cesarean against her will. That court order was (erroneously) upheld by the federal district court in Pemberton v. Tallahassee Regional Medical Center, 66 F. Supp.2d 1247 (N.D. Fla. 1999).  

This time around, in March 2009, Tallahassee Memorial Hospital saw fit to obtain a court order to force Susan Burton to be indefinitely confined in the hospital and made submit to any and all treatments deemed necessary by her physician, Dr. Jana Bures-Forsthoefel, for the benefit of her fetus.  The doctor was concerned that Ms. Burton, a mother of two children who was suffering pregnancy complications at 25 weeks, was at risk for premature labor, and also smoked during pregnancy. 

Under the court order, Ms. Burton could conceivably have been confined to bed rest and made to undergo ordered medical treatments for 15 weeks, until her due date. Sadly, her baby was delivered stillborn by emergency cesarean 3 days later. 

Ms. Burton’s request to change hospitals and get a second opinion was denied by the Leon County Circuit Court.  She was not represented by a lawyer, and had to argue her own case to the judge by phone from her hospital bed. 

Fortunately, Ms. Burton is now being represented by a lawyer, and has appealed the Circuit court’s order that in essence treated her as a fetal incubator, made to stay in bed and submit to any treatments her doctor saw fit.  In January, oral arguments in the appeal were heard before the Florida First District Court of Appeals. 

 On appeal, Ms. Burton argues, along with the Florida ACLU as amicus curiae, that the lower court wrongly applied the state’s “parens patriae” interest (which allows the state to act in the “best interest” of an already born child) to the fetus. By applying that standard to a fetus instead of a born child, the court completely ignored Ms. Burton’s own state constitutional interests at stake in the case – her critical interests in protecting her bodily integrity and privacy.  

 The state attorney in this case, Willie Meggs, who was also involved in the Pemberton case, shows little concern for the bodily integrity and rights of pregnant women. The actions of the hospital and Dr. Bures-Forsthoefel fly in the face of ethical recommendations made by both ACOG and the AMA, that pregnant women should not be forced to submit to medical treatment to benefit the fetus.  And the court ruling is inconsistent with those of other courts. 

The Burton case is a cautionary story—a woman goes to her doctor with complications in her 25th week pregnancy, only to be told she cannot leave (even with two young children at home), cannot get a second opinion or go to another hospital, and must stay confined there indefinitely, as her doctor orders.  If the decision is allowed to stand, pregnant women risk being “medically kidnapped,” as one blogger put it, if their behavior is not deemed best for the fetus. All pregnant women, at least in the Tallahassee area, should be on notice that they are fair game for over-zealous hospital lawyers and physicians who fail to see pregnant women primarily as persons with constitutional rights, but instead as fetal gestators who can be forced to “behave” as they see fit.

[Our guest blogger this week is Kathy Taylor, JD, PhD, is an Associate and Lecturer at the Center for Bioethics at the University of Pennsylvania School of Medicine.  You can see more about her background here.]

Randi Epstein's "Get Me Out: Making Babies Throughout the Ages"

As I was driving past the Brazilian Embassy a few days back on Massachusetts Ave in DC, I turned on the radio and heard "So tell me about these do-it-yourself forceps". My interest was instantly piqued. It was Fresh Air on NPR, and Terry Gross was interviewing Randi Epstein about her new book called "Get Me Out: Making Babies Through the Ages". Though the interview was only about 15 minutes long, it gave a very exciting example of what the book would provide, a deep look at technology, politics and sociology behind the history of women conceiving and delivering babies, right up until today's discussion of designer babies. Randi's interview was fascinating and I'm looking forward to grabbing the book!

[Editor's note: And read together with our previous post about Why I Love Designer Babies, you get a really  interesting, fun, and thought-provoking read]

Is Evidence Based medicine morphing into Algorithm Based medicine?

We all want health care to be based, as much as possible, on a scientific basis. When we initiate a treatment or make a diagnosis, we need evidence that the diagnostic methods are accurate and that the treatment is efficacious. But when “evidence based” medicine goes through the political process it can turn into “algorithm based” medicine. Let me explain.

Algorithm based medicine uses data from large groups and applies that to the individual. The NICE commission of Great Britain does that with their decisions about how much money they are willing to spend to prolong a patient’s life by six months. The recent new mammogram recommendations put forth by the U.S. Preventive Services Task Force do that for American women. Recommendations of this sort portend thinking that may soon be put into law. This approach places economics and so-called efficiency at a higher rank than autonomy and beneficence.

Going even farther than the U.S. PSTF, both the Pelosi and Reid versions of the Health Care Reform act currently before Congress mandate such algorithm decisions. For example, if you are 75 years old, have type 2 diabetes, had prostate cancer surgery six years ago, and have mild hypertension, you may have enough “points” against you that the algorithm will deny you hip replacement surgery on grounds that it is a bad economic investment. Your neighbor, who does not have type 2 diabetes but in all other ways matches you, might qualify.

This form of algorithm-based medicine is presented to the public as a way of containing costs and increasing efficiency. However, a truly intellectually honest way to present the matter is the following: “The algorithm dictates that it is preferable for a certain percentage of women in their 40’s die of breast cancer in order to make the cost of mammograms for women in their 50’s more affordable.” If presented this way the public would have a clearer picture of choices.

Here is another real life example. My fiancé, Beau Briese, a first year Resident in Emergency Medicine at Stanford, is currently working on a series of research projects that involve the PESI score, or the Pulmonary Embolism Severity Index score – an algorithmic method for determining the risk of mortality for patients who have image proven pulmonary embolisms. The score categorizes patients into five classes of risk for in-patient and 30 day mortality based upon 11 characteristics including gender, age, heart rate, and whether or not the patient has altered mental status. The goal of this score is to help physicians determine who needs to be admitted to the hospital and who can be discharged from the emergency room on the day of diagnosis. While I am glad that Beau is working on an algorithm that will help physicians determine an otherwise potentially subjective decision for hospitalization, it is also a method that if implemented strictly as rule rather than guideline may be detrimental to healthcare in general. For example, the PESI score class II has a 0.5% risk of mortality. That means that 1 out of every 200 patients who are sent home with this score will unnecessarily die at home. On the other hand, 199 out of those 200 people will not risk being needlessly hospitalized, which will save the patient time and worry and the hospital money and resources.

Putting distributive justice above autonomy and individual responsibility seems superficially to improve health care efficiency. However its long-term dangers are grave. Should the emphasis on health care be efficiency and equality? Imagine the following scenario.

Identical twin brothers graduate from the same high school and college in the same field. They live in the same neighborhood. One spends his money on fancy cars, fine wines, expensive restaurants, and trips to Las Vegas. He decides he is healthy and does not buy health insurance, using his resources for fun. His brother, who makes the exact same amount of money, buys a “Cadillac” health insurance policy, puts money aside to tide himself over in the event of disability, and drives modest cars. When they turn 40 they both develop the identical cancer. Should their treatment be the same? Should the prudent brother’s foresight gain him nothing? Should the brother who elected not to buy insurance until after he was diagnosed be allowed to have the same new health insurance as the one who bought it before the diagnosis?

The following are links to a description of the tragedy of the commons and defense of the proposed mammography guidelines and feel free to email me if you would like a pdf of the JEM PESI Score article:

www.econlib.org/library/Enc/TragedyoftheCommons.html

www.usnews.com/health/family-health/cancer/articles/2009/11/19/task-force-member-defends-mammography-guidelines.html

Designer Obstetrics: Cesarean Section on Demand

Should women be able to request a cesarean section to deliver their baby just because they can?

Cesarean Section on demand is defined as a primary or first cesarean section at the request of the mother in the absence of any medical or obstetrical indication. A cesarean section is usually done for maternal or fetal reasons in accordance with accepted medical practice and guidelines set forth by the American College of OB/GYN (ACOG). An electively requested cesarean section in an uncomplicated pregnancy has traditionally been considered inappropriate and not done by most obstetricians. However, in recent years this belief has been challenged and more obstetricians are honoring their patients decisions. ACOG, in their committee opinion No. 394, December 2007, outlines the most recent guidelines when confronted with cesarean delivery on maternal request.

There are risks and benefits for both planned a vaginal birth and for cesarean section. Some mothers requesting cesarean section rather than proceeding with a planned vaginal birth do so because they believe that a vaginal birth will cause damage to the pelvic floor. Later in life this could contribute to urinary/fecal incontinence and pelvic organ prolapse. Others opt for cesarean section because they fear the pain of labor and delivery. While others prefer the convenience of a scheduled delivery. The strongest argument against a cesarean section are problems that can arise in future pregnancies. Subsequent pregnancies following a primary cesarean section have increased rates of placental abnormalities (placenta previa, accreta and increta), uterine rupture, hemorrhage and gravid hysterectomy. Nationwide because of the overall increasing rates of primary cesarean sections and the repeat cesarean sections the rates of these life threatening complications have been on the rise.

Ethically, the question we obstetricians face is "which ethical principle should triumph - patient autonomy or non-maleficence?" Should the patient's right to autonomy be respected, after being advised and explained all the risks, benefits and alternatives, that is after informed consent is obtained? On the other hand should the physician as healer respect the principle of non-maleficence, "first do no harm" and so, refuse to accede to a patient's demand?

[Aycan Turkmen, MD, is an obstetrician/gynecologist and a guest blogger for the Women's Bioethics Blog.]