Adopted and donor-parented children fare much better when they are told the news early in life. Waiting only delays the inevitable - a child will find out, and the sooner they do, the better. Why do parents so often wait then?
Recently, Robert Klitzman wrote an article in the Huffington Post about the importance of giving children the news about their origins as soon as possible, because the psychological consequences of waiting are worse as time goes on. Keeping the information a secret only satisfies parents' selfish desires to remain the ultimate parent figures, and saves them the stress of breaking the news. This is more important now than ever, when 1% of childbirths use the assistance of reproductive technologies.
The situation seems to be even more complex now than ever, since donor children are not quite the same as adopted children. Before, it was simple enough to phrase, "we are not your real parents." Now, more thought-out wording is required to explain to a child that another individual donated their sperm or eggs to aid parents in using reproductive technologies to essentially "create" a child.
This, of course, is going to be a necessity, as the percentage of reproductive technology use only increases. However, the most pressing question on my mind is: what kind of implications does this have for future cloning practices? How do you describe to a child what kind of process conceived them?
This will further complicate things to a level that is yet unprecedented. Parents will need to explain more than ever, and the psychological consequences may be worse than any information regarding parenting has ever been. It seems as though most clones will undoubtedly face some sort of identity crisis trying to grapple with the concept of their being, and rates of depression would skyrocket. Suicide rates in clones would be much higher in relation to the rest of the population, and finding an effective way to handle clones and their psyches will not be easy.
Right now, we are struggling to find a safe method to protect the physical safety of clones, but once we solve this, an equally important problem waits in the shadows. When physical safety is provided for, mental safety is next. Will we be able to rise to the challenge?
http://www.huffingtonpost.com/robert-klitzman-md/in-vitro-fertilization-families_b_782690.html
Wednesday, December 8, 2010
Tuesday, December 7, 2010
Take .00132086 Gallons of Liquid Tylenol Every 4 to 6 Hours
One week ago, a study came out in the Journal of the American Medical Association indicating that approximately half of all adults who give medicine to their children end up giving them the wrong dosage. This often happens either because of confusing instructions on the medicine box or bottle, because the devices provided to measure the medicine have markings in units which do not match the units in the instructions, or because no measuring devices are provided at all. As reported in Dr. Sanjay Gupta’s blog on cnn.com, about 25% of medicines do not come with a measuring device, and of the 75% that do, a whopping 99% have inconsistencies between the dosing instructions on the label and the dosing markings on the measuring device.
In response to reports last year of children overdosing because their parents provided them with the wrong doses of medicine, the FDA issued a series of voluntary guidelines to drug companies suggesting steps by which they might decrease the risk posed by this fundamental flaw in their products. The steps they suggested are quite obvious: “The FDA recommends that all OTC liquid products include a measuring device and that the same units of measurement and abbreviations appear on the device and in the written label instructions. It also recommends limited marking on the dosing cups or devices—only those needed to get the right dose. The FDA also recommends standardizing abbreviations.”
Surely it didn’t take a genius to figure those ones out. Putting aside the fact that it was wrong for drug companies to even think of releasing drugs with inconsistent units of measurement, the most glaring atrocity in this whole situation is that the FDA has not made their guidelines mandatory. The FDA has a duty to ensure that all drugs which are released on the market, and especially ones that are OTC and not regulated by a doctor, are safe to be used. Safe means not only that taking the recommended dosage will not do undue harm, but also that the packaging and measuring devices are designed in such a way as to ensure that it is very easy for the average person, and even those of subpar intelligence, to take the correct dose.
Going back to the CNN blog post, the author writes, “In some cases the directions used terms such as teaspoon or tablespoon while the cup or dropper listed doses only in milliliters. Rarely were there instructions to convert from one form of measurement to another, according to the study.” While this would technically be enough information to calculate the correct dosage, even providing conversion factors is still, I think, not good enough. Health is a universal right, and the ability to multiply should not be a prerequisite. I suspect that drug companies like the lack of regulation because it allows them to manufacture a generic measuring cup for all the different products which they produce, and the fact that the FDA has allowed them to get away with this for so long (and is still allowing them to do so) is a fundamental failure on the part of the government to protect its people.
Syntes Surgeons Test Bone Cement on Spinal Surgery Patients W/O Consent
Synthes Incorporated and its subsidiary, Norian Corporation are responsible for orchestrating a series of “unauthorized tests of its bone cement on about 200 spinal surgery patients” that resulted in a few deaths. The use of bone cement had already been approved to be used in the arm, but had not yet been approved to be used in the spine. Synthes “had trained surgeons to use it ‘off-label’ so the company could gather data to support its expanded use.” Company members pleaded guilty and are reportedly aware of the unlawfulness of their actions. Apparently Synthes company members and surgeons had been warned previously that the tests they were performing were considered “human experimentation.” Although the surgery was not the cause of the deaths of the patients- it was most definitely a contributing factor. “The patients who died suffered severe hypotension, or low blood pressure, following injections of Norian bone cement,” which leads one to believe that perhaps the injection of bone cement was a primary instigator of death. What other medical observers, such as Dr. Kassirer, professor of medical ethics at Tufts University Medical School find absurd is that not only is it unusual that the Synthes employees immediately pled guilty and sought jail time, but also that with this “off-label marketing…companies view these settlements of $300 million, $400 million, even…$1 billion, as almost spare change.” Rather than paying off expensive fines for illegal and immoral surgeries, this money could be invested wisely such as in cancer research or something of the sort. What’s startling to believe is that these surgeries were conducted from 2002 to 2004 and they are just now being brought to justice. I believe it was guilt that forced the Synthes employees and surgeons to immediately plead guilty—I imagine it’s a terrible feeling to know that you caused another’s death. If there’s one thing I have observed from the medical and scientific world, it’s that patience does indeed pay off and it’s especially important to respect this law when one’s health is at hand.
And so if companies are so willing to pay off their fines and hardly sweat at doing so, is this proper punishment? There must be a way to firmly bring ill-acting companies to justices so that they learn that putting patients’ lives in danger for the sake of experiment is absolutely not okay. Human experimentation, especially human experimentation without consent is never acceptable—and these larger companies must learn this in a way that truly makes an impact.
http://www.latimes.com/business/nationworld/wire/sns-ap-us-medical-devices-fraud,0,6267730.story
Sunlight and Sneaky Incentives
Drug companies are currently paying doctors in sneaky ways in order to get them to prescribe the drugs they produce. They have been treating doctors to meals at expensive restaurants, sending gifts, and even writing them checks. As public criticism mounted, an pharmaceutical industry trade group began to crack down on these payments, the drug companies found even sneakier ways to give incentives to doctors. These disclosed payments can cause conflicts of interest.
Perhaps what is needed to keep these in check is to make all the undisclosed payments to come to light. To this effect, a national sunshine law that takes effect in 2013 would require all pharmaceutical companies to disclose the money that they are paying doctors. However, social psychological theories suggest that informing the public about how much doctors are receiving from drug companies might actually cause more doctors accept the incentives from drug companies. By exposing the widespread nature of a problem, doctors may become influenced to think that accepting financial incentives from drug companies is a common practice and therefore acceptable. Furthermore, doctors who disclose to their patients that they are receiving benefits from drug companies become more biased in their recommendations to their patients, and ironically, patients are also more likely to trust them. This casts doubts on whether the sunshine law would really help to reduce the negative effects of the doctors' bias on patients.
To add to this drama, an independent investigative journalism group, ProPublica, has recently put up a searchable database on their site. This database, “Dollars for Docs”, allows anyone to check how much money their doctors are being paid by drug companies. Would this then worsen the effects of biased prescriptions? It appears so. While exposure of statistics and high-profile case by news agencies would only cause doctors to get a general sense of how many doctors are getting incentives, “Dollars for Docs” allows the doctors to actually find out how much their peers are getting paid. This acts as an even stronger social proof, since a doctor would likely be able find someone he/she knows as a decent person who is receiving much more money than he/she is. This may cause even more doctors to accept incentives from drug companies.
Does this mean that ProPublica is doing a disservice to the public? Not necessarily. It allows the government to see the problem as what it is, and tackle it accordingly with the right kind of legislation and enforcement. If government officials are given to authority to act on this information to impose penalties on doctors who receive incentives, then disclosure is the right step to go.
Monday, December 6, 2010
A Cure For Traumatic Experiences?
Tragedy. It happens. It is a part of human life that we all may face one day. Yet what occurs when the negative and painful experiences from such tragic events become so overwhelming that they impair us in our everyday lives? The mind has its own way of protecting itself from trauma by repressing memories of such events, but neuroscience researchers at Johns Hopkins University are taking matters into their own hands and conducting research that may lead to a drug where doctors can selectively erase painful memories from the minds of human beings.
Research began by administering electric shocks to a group of a hundred or so mice while playing a sound (classical conditioning- so that the mice can associate the pain they received with the sound they heard). “They also administered a drug to some of the mice that kept their brains flooded with AMPARs. Those mice retained the fearful memories of the sound long after the initial jolt, while the drug-free group gradually became inure to it, eventually forgetting the painful experience”. This suggests that AMPARs are essential to the brain’s formation of memory and researcher Joseph E .LeDoux at NYU remarks that “It’s a huge step forward” in developing a drug that serves to block AMPARs and potentially eliminate harmful memories. Dr. Richard Huganir, director of the Neuroscience Department at Johns Hopikins believes that this could serve as a treatment for the 8 million American citizens who suffer from PTSD. People living with PTSD have already contacted Huganir eager to take part in drug trials. While all this seems good and well as a miracle treatment for traumatic experiences, there is a serious underlying ethical issue these researchers seem to be neglecting. Though this drug will no completely erase the painful memories, it will eliminate the strong emotional attachment people have, something that I feel is eerily unnatural.
Humans are, as many people believe, the sum of our experiences. We are shaped by both the positive an negative experiences in our lives. In truly traumatic experiences, I believe a humanistic approach to treatment where individuals can learn and grow from their experiences is perhaps the best way to recover from a traumatic experience. I acknowledge the severity of disorders such as PTSD that result from traumatizing moments in life, yet questions will arise in the future over what constitutes an experience as being traumatic enough to warrant the use of such a drug. There is something slightly inhuman about eliminating emotional attachment to our experiences, and these neuroscientists must be wary of such ethical concerns as the continue with their research.
Sources:
1) http://www.businessweek.com/magazine/content/10_50/b4207050515280.htm?campaign_id=rss_null
Friday, December 3, 2010
Diagnosis of Alzheimer's: Ignorance Is Bliss?
Alzheimer's is a mental degenerative disease which, though common, is still not at all well understood. Currently, the leading hypothesis for the cause of Alzheimer's symptoms (memory loss and a progressive inability to care for one's self) is the "amyloid hypothesis" which says that the disease occurs when a toxic protein, beta amyloid, accumulates in the brain. The bulk of drug research has been based on this hypothesis, focusing upon the idea is that if beta amyloid levels are reduced, the disease might be slowed, halted or even prevented if treatment starts early enough.
Many drugs have been developed, however very few have been effective. For example, the "Lilly" drug at first seemed promising, and was among the first shown to breach the blood-brain barrier and reduce levels of beta amyloid in the brain. But while it did slow down amyloid production, it did not have any prolonged effect of reducing symptoms in Alzheimer's patients. In fact, it even proved detrimental to their health because of other side effects that were originally not expected.
The "Lilly" example demonstrates the tension between our current lack of knowledge about the workings of the disease, and our desire to develop drugs in order to alleviate suffering. This tension has been intensified by the improvement in detection technologies, which are able to pick up even slight levels of plaque build up in the brain and allow for accurate predictions of Alzheimer's disease before its full onset later on.
But even though we have these technologies, is there really any benefit to the average individual for getting tested early on for Alzheimer's, if there are still no drugs which can help later? Simply knowing that you will develop Alzheimer's, while there is no available cure, has almost no benefit to the patient - it might simply produce feelings of hopelessness and depression while potentially complicating other aspects of life such insurance and employment. Once the world knows that you are soon doomed for mental incompetency, they will treat you differently.
Right now, the only benefit from this highly sensitive testing is for drug companies and researchers, who will be able to identify test subjects and carry out better trials on patients who do not already have advanced Alzheimer's. Usually, we like to focus upon relieving suffering, and to be aware of our own states of health. But perhaps ethically, in this case it would be better right now to focus upon understanding of the disease rather than finding a cure. Given our current state of knowledge and lack of a cure, perhaps ignorance is bliss for the general population when it comes to Alzheimer's?
http://www.nytimes.com/2010/08/19/health/19alzheimers.html?_r=1&ref=the_vanishing_mind
Many drugs have been developed, however very few have been effective. For example, the "Lilly" drug at first seemed promising, and was among the first shown to breach the blood-brain barrier and reduce levels of beta amyloid in the brain. But while it did slow down amyloid production, it did not have any prolonged effect of reducing symptoms in Alzheimer's patients. In fact, it even proved detrimental to their health because of other side effects that were originally not expected.
The "Lilly" example demonstrates the tension between our current lack of knowledge about the workings of the disease, and our desire to develop drugs in order to alleviate suffering. This tension has been intensified by the improvement in detection technologies, which are able to pick up even slight levels of plaque build up in the brain and allow for accurate predictions of Alzheimer's disease before its full onset later on.
But even though we have these technologies, is there really any benefit to the average individual for getting tested early on for Alzheimer's, if there are still no drugs which can help later? Simply knowing that you will develop Alzheimer's, while there is no available cure, has almost no benefit to the patient - it might simply produce feelings of hopelessness and depression while potentially complicating other aspects of life such insurance and employment. Once the world knows that you are soon doomed for mental incompetency, they will treat you differently.
Right now, the only benefit from this highly sensitive testing is for drug companies and researchers, who will be able to identify test subjects and carry out better trials on patients who do not already have advanced Alzheimer's. Usually, we like to focus upon relieving suffering, and to be aware of our own states of health. But perhaps ethically, in this case it would be better right now to focus upon understanding of the disease rather than finding a cure. Given our current state of knowledge and lack of a cure, perhaps ignorance is bliss for the general population when it comes to Alzheimer's?
http://www.nytimes.com/2010/08/19/health/19alzheimers.html?_r=1&ref=the_vanishing_mind
Monday, November 29, 2010
Californian Consent
If the United States was the King’s court, California may be its jester- a state where popular referendum rules, where hulking actors and internet flea market CEOs vie for governorship, the home of Beverly Hills cops, scientologists, daisy dukes, and a host of other ridiculous phenomena. It comes as no surprise then that California may be in serious violation of certain guiding bioethical principles.
After a child is born in California, doctors dab a few drops of blood on a blood card to test for 77 genetic diseases. As necessary as these life-saving tests are, parents wonder why the genetic material is being kept by the state as property indefinitely. The cards are shuttled after the tests to scientific researchers who store the genetic material in a databank. California now has an inventory of 15-million cards that can be used later when necessary for “research, lawsuits, and investigations” (KTVU). From the state’s perspective, if the option is available, it sees no trouble in availing it for a good cause. Furthermore, doctors notify parents about the blood cards in paperwork they read after the delivery.
Unfortunately, that doesn’t quite cut it for a lot of parents. Diana Oros recalls, “They might have given me a piece of paper, but it was right after birth. We were tired. There was so much going on we didn’t have time to read anything.” Though the doctors tried to receive ‘consent,’ it was clearly far from ‘informed.’ Some parents like Alvin Ziegler were “outraged” when they found out about the practice.
Fred Lorey of the Genetic Disease Screening Program quips that if there is any issue, “we’ll destroy it. We’ll even send it back to you if you prefer.” There may be some truth to his sardonic jab at these parents’ indignation, but nothing can replace the necessity of open communication and a respect for people’s autonomy in the medical world. Without informed consent, doctors fail to respect the parents’ role as proxy for their children. That feeling of inadequacy in caring for one’s young can be damaging, and it’s no wonder that fathers like Ziegler react so vociferously. This is not an issue with the genetic tests themselves, and privacy rights are not the issue at hand either since these blood samples are being used for good. Instead, doctors should take greater precautions before rushing DNA to a database. But what do you think? Is privacy perhaps the greater issue here? Is informed consent a model we should follow depending on the situation? In this case, would it just be innane to adhere so religiously to an ideal?
Since informed consent has become such an integral part of the bioethics dialogue, researchers need to make sure parents understand what exactly is being done with their newborns’ blood samples. California should realize soon that that knowledge is imperative; to claim otherwise would be foolish.
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