Death with Dignity: the Brittany Maynard Story

By Nonie Arora

Is it acceptable for patients to choose to die on their own terms? Can physicians assist them with their wishes? Where do we draw the line for euthanasia and end-of-life decision making? Faculty and students discussed these thorny issues at a recent Science & Society Round Table event, co-hosted by the Duke Undergraduate Bioethics Society.

Read more on the Duke Research Blog at : http://sites.duke.edu/dukeresearch/2014/12/19/death-with-dignity-the-brittany-maynard-story/

How We Remember — And Forget

By Grace Li

We never see reality as it is—our memories overlay streets and sights, and everything we experience is influenced by what we have experienced before. Memory is a beautiful thing, but it can also be a dangerous thing. Traumatic events, for example, generate memories that are among the most enduring. For victims of PTSD, memories are at the root of their disorder. A recent study, “Epigenetic Priming of Memory Updating during Reconsolidation to Attenuate Remote Fear Memories,” attempts to help those who have memories of trauma.

For those who have experienced recent trauma, treatment can effectively use the brain’s own memory updating mechanisms simply by prompting the person to recall the traumatic memory. However, the same thing cannot be done with trauma that occurred further in the past. In order to enable memory updating, the researchers utilized epigenetics, or the chemical modifications that influence gene expression.

Memories

There is a gene in the brain that is important in memory updating but only works after it’s modified. Usually, there is something (more specifically, something called a histone deacetylase, HDAC2) that sits on that gene and prevents it from being modified. The brain activity that occurs when a person is recalling a recent memory results in HDAC2 falling off, freeing the gene to update memories. But when a person is recalling a more remote memory, there is less of the necessary brain activity, so the HDAC2 stays on and the gene can’t update memory. What the researchers did was use an inhibitor of HDAC2, so even though there wasn’t enough brain activity to cause HDAC2 to fall off, the gene could still be modified because the inhibitor prevented HDAC2 from working. Therefore, they were able to facilitate memory updating even in remote memories.

It’s a complicated bit of science, but what it boils down to is that memories that have been with us for years can be diminished and perhaps even erased, as the memory updating makes the brain “more capable of forming very strong new memories that will override the old fearful memories.” It holds promise for those that have experienced trauma and wish to be rid of it, but it also has some perils. We have memories for a reason, after all. Evolutionarily, they have helped us avoid danger, to remember what berries will kill and what paths to avoid. Even today, they protect us. A child who has a nut allergy and went to the emergency room after eating a spoonful of peanut butter has (hopefully) learned a valuable lesson.

There are times when memories can harm us, yes, but can the solution really be to override the memory completely? Given how little we know about the brain, the chances of using this research on humans in the near future is slight—the brain is a delicate thing, and one tweak could result in a malfunction of the entire, elaborate machinery. We do not yet have the knowledge to claim mastery over the mind—or even our own memory. This is one step in that direction, though, and like with all new advances, it holds great risk and great reward.

Complementary and Alternative Medicine – Is It Worth Integrating?

By Willa Chen

Since the dawn of modern conventional medicine, the use of complementary and alternative medicine (CAM) has long been debated. Contrary to modern medicine, CAM is medicine that is not based on scientific evidence. In fact, many fields of CAM, such as acupuncture and Traditional Chinese medicine, are based on energy or qi flow throughout the body and other concepts that seem nonsensical to those with scientific and modern medicine backgrounds. It wasn’t even until the 1980s that the American Medical Association finally allowed those in the medical profession to be able to suggest or refer patients to CAM practitioners, and since then, many more ethical issues have arisen. For one, many physicians who do not believe in alternative medicine still refrain from informing their patients of these options. This violates the patient’s right to full disclosure of all treatment options. It also leads to patients seeking CAM therapies without the supervision or knowledge of their primary care provider, which can sometimes lead to adverse effects if there are conflicting treatments or drugs prescribed. This brings about the question – should alternative medicine be considered a legitimate form of treatment in the first place?

Currently, there is little research surrounding the efficacy of alternative medicine. Since most alternative medical treatments are not patentable, there is little funding for research, especially from the private sector. Additionally, it is very difficult to measure the efficacy of these treatments vs. the placebo effect. However, several clinical trials have shown promising results for various forms of alternative medicine. For example, according to a World Health Organization report, acupuncture has been shown to effectively treat various diseases, symptoms, and conditions, such as chronic pain and injuries including tennis elbow, sprains, and lower back and shoulder pain. Additionally, alternative medicine has been shown to relieve stress, as well as provide many other psychological and mental health benefits. For these reasons, many people are starting to vouch for the use of alternative medicine as complementary or integrative treatments alongside conventional medicine.

Acupuncture The growing acceptance of CAM has been made clear at Duke with the construction of the new Student Health and Wellness Center, which will begin in Spring 2015 and be complete by Spring 2016. With this new center, Duke is hoping to make integrative alternative and holistic medical options more accessible to the student body. One interesting feature of the center is access to an acupuncture facility, which is in collaboration with Duke Integrative Medicine. Since acupuncture has been shown to treat injuries, anxiety, and stress, having an acupuncturist at Duke may be very beneficial to the student body.

Although there is still much more research needed on the efficacy of alternative medicine, given that fields such as Ayurvedic medicine and Traditional Chinese medicine have prevailed for several thousand years, these alternate and holistic treatments are something worth looking into.

 

When Is It Unfair To Compete?

 By Joseph Kimble

When it comes to international sports, specifically the Olympics, the division between genders in competition has been clear—males compete with males and females compete with females. On the surface, this seems to be the fairest case; on average, Olympic males can typically put on more muscle mass and attain lower body fat percentages than females, leading to an advantage in competition. One of the reasons this is the case is due in part to the hormone testosterone. Testosterone has been linked with increases in muscle mass and strength, and faster workout recovery times. In light of this, the International Olympics Commission decided to set testosterone levels for competition with separate acceptable ranges for men and women alike.

What happens when an Olympic athlete surpasses one of those limits? In the case of Dutee Chand, an Olympic 100-meter competitor from India, this what-if scenario has become a reality. Dutee Chand, who is 18 years old and has hyperandrogensim, has been deemed unable to compete internationally with women (by the International Association of Athletics Federations, I.A.A.F) due to a testosterone level that is well beyond the Olympic limit for women, and is even past the lower threshold for men. Chand, who has never taken performance-enhancing drugs, will only be allowed to compete again if she takes hormone-suppressing drugs, or has surgery to reduce the amount of testosterone her body produces.

TH05_DUTEE_1933478eThe International Olympic Committee and other proponents of the decision claim that there must be a cut-off limit somewhere—it is not always going to be fair. They deem that there must be some way to decide who competes with whom. They also believe that Chand would have an unfair advantage over her peers. With a body able to produce so much testosterone, she would gain muscle mass faster than her colleagues. People who disagree with the contentious decision point to the fact that Chand has done nothing illegal. She is merely competing with the body she was born with.

 

Although Chand will be appealing her case to an international board, this situation brings rise to a whole new set of problems in the sports community. Should a condition an athlete is born with, which happens to enhance their performance, bar them from competition? Better yet, can we strictly claim that an increase in testosterone will directly impact performance, leading to competition ranges? With more cases like these to surely develop in the future, it is likely the International Olympic Committee will have to take a good hard look at their current competition regulations.

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The Right to Death

By Guest Blogger Anuhita Basavaraju

The right to life is seldom ever a point of contention. Few would argue against one having the autonomy to decide what goes on in one’s life, in so far as one isn’t harming other people. But most would, at the very least, be taken aback by an individual not only having the moral but also the legal-medical right to end his own life with the help of a physician when inflicted with a terminal illness and imminent death. Physician-Assisted-Suicide

In 2011, Ethan Remmel, a terminally ill cancer patient and father of two, purposefully overdosed on prescription sedatives. Remmel obtained the drugs from physicians at the Seattle Cancer Care Alliance (SCCA) Hospital’s “Death with Dignity Program.” It’d be slightly comforting to believe that Remmel was an exception, but in 2009 Washington State passed The Death with Dignity Act and Remmel joined 240 others with his decision. Physician assisted suicide (PAS) is currently only legal in the states of Oregon, Washington, Montana, Vermont, and New Mexico. But we’re following a trend where it will eventually be legal in many more.

Why would someone contemplate PAS? Experts attribute the desire to fearing a loss of autonomy and control. If we assume­– and can do so quite realistically­– that those who would go for a PAS are terminally ill, then they know that their death is near and unavoidable. They also know that as their death approaches, their rational agency will slip away. So to avoid being in a possible vegetative state, terminally ill patients prefer to choose PAS. Others explain that they want to know when the pain will come and in this way have a control over it. Essentially, the rationales boil down to the desire to maintain whatever little autonomy one has when the physical state of the body has turned against him/her. Even if there was no choice in having the disease, at least one can pick when the pain will all end. The decision to end one’s own life is not light: by its very nature it is one that requires extensive contemplation. In fact in the states that PAS is legal, it is used by less than 5% of terminally ill patients. It is also important to consider the immense measures of pain the individual will be in, if he/she is to die naturally. Most, however, cite wanting to die a “peaceful” death with family.

But, of course, the issue of PAS is not simple. Arguments against it include the possibility of false prognosis: maybe if the patient were to have not gone through a PAS, it would have been discovered that his/her illness had a cure or that he/she is not terminally ill. Another is the inherent hypocrisy and contradictory nature to a situation where doctors are ending lives and not saving them. Another questions the fundamental assumption of arguments “pro-PAS”, that the patient’s autonomy and rational agency is being respected, by suggesting that family and friends may pressure the patient to commit PAS to escape having to deal with the emotional turmoil of a loved one experiencing such pain.

PAS will likely be a point of contention for years to come. We have the right to life, but do we have the right to death?

Modern Eugenics?

By Shanen Ganapathee

According to a 2007 New York Times article, 90% of unborn children diagnosed with Down’s syndrome are aborted. With advances in prenatal screening tests, invasive tests like amniocentesis or chorionic villus sampling(C.V.S) have been cast aside in favor of a screening test that analyzes fetal genetic fragments present in a pregnant mother’s blood. Only after receiving a positive result from the newer screening test, do mothers have to go forward with the more invasive methods. The test has been hailed for its “extraordinary accuracy” and its low risk. Added to that, the test can be carried out relatively early on during pregnancy, leaving margin for planning and decision-making for the mother. Only a small blood sample, which is bound to contain free-floating fetal DNA is required from the pregnant woman, which is then sequenced and screened for genetic disorders. The new DNA tests are “not diagnostic,” Dr. Lee P. Shulman, a geneticist at Northwestern University Feinberg School of Medicine, said. Confirmation through amniocentesis or C.V.S is important.

With the new set of tests improving the detection of a range of genetic disorders, the most popular being Down’s syndrome, it is now easier than ever to detect if one’s child will have Down’s syndrome. The hardest part remains the decision to abort or not. Richard Dawkins, the notable English biologist author of “The Selfish Gene”, among others,  has faced serious backlash for tweeting that keeping a Down’s syndrome baby after a confirmed diagnosis is “immoral”.

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Responses  from families that have Down syndrome-afflicted children have populated the biologist’s Twitter and the tension was palpable. The broader question that could be drawn from Dawkins’ comment would be: “Are we carrying out eugenics?”. With the screening tests at their most accurate and with 9 out of 10 fetuses with Down’s syndrome aborted, are we artificially selecting against the genotype that leads to the disease? If people were to follow Dawkins’ instruction to “abort and try again”, would we as a human species be actively erasing Down’s syndrome from our society?

 

 

Direct-to-Consumer Genetic Testing: From Spitting Parties to FDA Legal Action

 By Josh McMenemy

spit partyWomen in cocktail dresses mingle with men in suits over glasses of wine. The scene defines a typical social gathering except for the strange site of some guests sitting together as they spit into plastic tubes⁠. For $999 these individuals could then send their saliva samples to a private direct-to-consumer genetic analysis company, 23andMe⁠. 23andMe would return the results of fourteen genetic traits through analysis of single nucleotide polymorphisms (SNPs) associated with those traits⁠. SNPs refer to places in the genome where individuals differ by a single base-pair. Since these first “spitting parties” in 2007-2008, 23andMe dropped its price down to $99, increased its report to 254 genetic traits, and expanded its customer base to 500,000 people⁠. Attention to the ethics and legality of direct-to-consumer genetic testing has also increased during this time.

Pro-privacy ethicists point out that sharing genetic data does not just sacrifice the individual’s privacy, but the privacy of relatives. For example, Cheryl Wittle purchased 23andMe kits for herself, her husband, and her half-brother to try to figure out potential genetic causes behind her miscarriage. However, when looking at 23andMe’s relative finder she noticed that her half-brother did not show genetic relatedness. Another 23andMe test of her sister showed they only shared 25 percent of SNPs instead of the 50 percent expected of full siblings, which confirmed that her father was not who everyone thought. Cheryl felt relieved because she never felt connected to her father, but many of her other relatives stressed over how Cheryl’s mother lied for decades and how this information tarnished the reputation of the recently deceased couple⁠. Similarly, others have discovered they were born by a sperm donor when their parents wanted to keep that fact a secret⁠. Additionally, researchers can infer genetic traits and disease risks of individuals who don’t want their genetic information analyzed from relatives who shared their genetic information2. These quandaries pit freedom-of-choice rights against privacy rights.

23andme kit23andMe also attracted legal and ethical attention by interpreting customers’ disease risks based on SNPs associations⁠. Using genetic information as a predictive diagnostic made news headlines when Angelina Jolie decided to undergo a preventive double mastectomy after a genetic test indicated an 87 percent chance of her developing breast cancer⁠. Angelina Jolie received her diagnosis from an FDA approved test in a clinical setting⁠. Although 23andMe bases its SNP associations using peer-reviewed published research data, the FDA has not clinically approved its test and its online report does not offer the same counseling support received in a clinical setting. Therefore, some health care professionals worry that individuals will damage their health by making decisions based on potentially unreliable and nonprofessionally explained results6⁠.

In November 2013, the FDA sent 23andMe a letter stating that the company markets its personal genomic services as providing “health reports on 254 diseases and conditions” enabling customers to take “preventive steps toward mitigating serious diseases”. The FDA stated that this falls under medical device classification, which requires market approval, and therefore 23andMe must remove their service from the market until the company receives FDA approval⁠. 23andMe complied by stating they will only return ancestry information and raw SNP data with no health association interpretations. 23andMe additionally announced a plan to work with the FDA to gain market approval for re-offering health interpretations⁠. Nita Farahany, a Duke law professor, and other policy makers criticized the FDA for being paternalistic in their action against 23andMe⁠.

What started out as niche spitting parties now garners the attention of bioethicists, law makers, the FDA and half a million customers. The policy decisions surrounding the sharing and interpretation of one’s own genetic information will potentially have a large impact as personal genetic technology continues to advance.

Return of Results

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By Elisa Berson

Research, particularly medical studies, aims to produce findings that result in positive implications for human health. Whether results from a study demonstrate that one should avoid a drug due to one’s genetic code or be proactive about checkups due to an increased likelihood of a certain disease, these studies yield valuable information. However, there is continued debate about whether participants in genetic research projects serve to directly benefit from sharing their genetic information. The debate is especially relevant to those participants whose information is shared in a biobank and may have filled out a general informed consent form. These individuals would not necessarily know all of the particulars of who is accessing their data and what type of research is performed using their information. Many who argue against the sharing of information amongst researchers cite problems with making presumptions about participants’ desire for information, not understanding the complex circumstances surrounding a patient’s case, and the time and cost associated with providing results to participants. Even in cases where there seems to be utility in sharing information, researchers debate the meaning of that utility (e.g., is it clinically useful or does it just satisfy the curiosity of the patient) and the implications of revealing information without also providing access to genetic counselors. Moreover, even in cases where researchers have a system or the means to inquire about whether participants would prefer to have results returned or not, surveys asking about participant preferences may not capture the full set of his/her values. Similarly, individualized circumstances often need be considered to determine how the information would benefit or detract from the well being of the participant.

A proposed solution is to provide participants with access to aggregate results.  Aggregate results remove the costs associated with disseminating individualized information and alleviate the concerns of providing individualized results to participants. However, by stripping the data of personally identifying information, researchers unveil a whole series of new problems. Participants may be prone to making assumptions about their health based on the aggregate data results, and in studies that assess disease risk, participants could wonder if they are a part of the group with a greater predisposition for a condition. Ultimately with proper security and technology, the return of individualized results seems beneficial. Through an advanced computerized system that protects participant privacy (by sending out information without re-identifying the individual), participants could be asked about particular studies and the information for which they would like to be notified. People could watch videos and receive links to information about the implication of having their results returned so that they can make an educated decision. Also, participants could receive information on genetic counseling (through links and other sources), and well-funded projects could even provide vouchers to those participants who want to attend a genetic counseling session after receiving information.

The Hobby Lobby case – the new Citizens United?

By Johnny Wei

Last November, the Supreme Court decided to grant cert to a new legal case challenging the Affordable Care Act (ACA), Sebelius v. Hobby Lobby Stores, Inc. In this case, the founders of Hobby Lobby stores, the Green family, are challenging the controversial “contraceptive mandate” in the ACA. The mandate requires private health insurers to provide all FDA-approved methods of contraception to women with no copayment. Now, the Greens don’t have an issue with methods like the Pill or surgical sterilization, but they do have issues with types of emergency contraception that prevent the fertilization of an egg like Plan B, which stand in direct conflict to the Greens’ religious beliefs.

So what are the Greens suing for? They argue that under the Religious Freedom Restoration Act (RFRA), the mandate constitutes a “substantial burden” on their right to free exercise of religion under the First Amendment. This is a tough barrier for the Obama Administration to overcome, as the RFRA imposes the strictest standards on the government to justify infringing on civil liberties – in fact, the 10th Circuit Court of Appeals already ruled in favor of the Greens in a large majority. If the Supreme Court decides to uphold the lower courts’ ruling and strike down the mandate, the effect on women’s health and public health could be devastating. Many lower- income women might not be access safe and effective methods of contraception, not to mention losing out on several non-contraceptive medical benefits like safer pregnancies and a reduced risk of various types of cancer. However, an interesting caveat in this case is that the Greens’ believe their right to free exercise is not the only one being infringed – the mandate affects the rights of their business as well.

Hobby LobbyIf you’re not familiar with Hobby Lobby, it’s an arts and crafts store that is run accordingly with the Greens’ deep faith in Christianity (like Chick-fil-A, Hobby Lobby is also closed on Sundays). Will the Supreme Court find that corporations like Hobby Lobby also have a First Amendment right to free exercise of religion, much like they found a right for political speech in Citizens United? Now, corporations can certainly be organized or run in accordance with certain beliefs, but that’s not the same as finding a constitutional right.

The implications of this decision stretch far more than access to contraceptives – it could significantly affect First Amendment jurisprudence for years to come. Hobby LobbyOral arguments for Sebelius v. Hobby Lobby Stores, Inc. will occur on Tuesday, March 25th 2014. Be sure to stay updated on what could very well be the highlight of this term, and a     potential landmark decision.

 

Genetically Designed Monkeys: Are Humans Next?

By Grace Lidesigner-baby

Just two days ago, on January 30, researchers in China reported that they have bred monkeys that are engineered withspecific mutations.  The mutations were in two genes, one that helps regulate metabolism and the other that is involved in healthy immune function. The researchers were able to genetically modify the monkeys by using a new gene-editing method. While the previous viral method creates mutations effectively, the mutations are random. This new method, called the CRIPSPR/Cas9 gene-editing system, uses customizable snippets of RNA to guide Cas9, a DNA-cutting enzyme, to the chosen site for the mutation.

The full article on these monkeys is here: http://www.nature.com/news/first-monkeys-with-customized-mutations-born-1.14611

But what interested me about this article—and what’s probably the reason why the majority of people are interested in this—is not solely the incredible advancement of science and technology that is demonstrated here, but the ramifications it has for society and the future.

The idea of customizing the genes of a monkey gets us quickly down a slippery slope and to the idea of customizing genes for humans. Do we have the right to choose if our children have blue eyes or green? Curly hair or straight?

designer-blue-eyesThat sounds fairly ridiculous.

But what about more serious matters. What about deciding that you don’t want a kid with Trisomy 18? A child with Huntington’s disease?

Drawing the line gets a bit blurrier.

If we are able to isolate the genes for intelligence, for artistic skill, for musical talent or extraversion or ability to do organic chemistry—should we use that information?

Humanity has a history of messing with nature, with bending the rules of the universe to our will.  We can do so many things that we never could have imagined were possible, thousands or even hundreds of years ago.

So the next question is…

Can we design our own future?

Should we?