In light of other recent news, it was easy to ignore another star’s sordid life confessional. If you missed it, Charlie Sheen decided to disclose that he was diagnosed with HIV four years ago. His choice to go public was spurned by blackmail threats by one, or perhaps more, of his past partners. Sheen’s poor life choices aside, medical blackmail is a growing concern in a time when medical information is vulnerable to disclosure. It goes beyond an individual exploiting a juicy piece of gossip for personal gain. Now that electronic medical records are becoming more common, just how often does medical blackmail happen?
My latest post in Salvo’s Signs of the Times addresses a question posed by several researchers from Australia, The Netherlands, and the U.K. in a recent commentary in Nature Methods: What if stem cells turn into embryos in a dish?
While it is not yet possible to turn pluripotent stem cells into embryos, it may one day be.
It’s the stuff of comic book lore. A young woman who was a former professional athlete gave birth to a baby with unusually developed muscles. She did not give the identity of the boy’s father, but several members of her family have been known to have unusual strength. She was muscular, herself, although not as remarkably strong as her son.
All tests showed that the boy was healthy and normal except for his unusual muscle mass. When the child was four years old, scientists did genetic and biological studies to determine the cause of his unusual features and found that he lacked a gene related to muscle building called myostatin. At four he was able to hold 3kg (~6.6 lbs) dumbbells in each hand with his arms extended horizontally. The child had twice the muscle mass and half the body fat of other children his age. His parents keep his identity a secret to maintain his privacy.
Current laws about federally funded human subject research were last updated in 1991. Since then, the Human Genome Project was completed, and an entire field, known as epigenetics, has arisen from this. Just recently, a new robust gene-editing tool, CRISPR-Cas9, blew away older versions of gene editing. It is now “fast” and “easy” to analyze and make DNA in the laboratory, and if a researcher has access to your genetic material that material can be traced back to you. A lot has happened in genetics since 1991.
In an opinion-editorial in the Boston Globe Harvard psychologist Steven Pinker wrote that the best thing bioethicists can do to help society is to get out of the way:
Biomedical research, then, promises vast increases in life, health, and flourishing. Just imagine how much happier you would be if a prematurely deceased loved one were alive, or a debilitated one were vigorous — and multiply that good by several billion, in perpetuity. Given this potential bonanza, the primary moral goal for today’s bioethics can be summarized in a single sentence. Get out of the way.
My typical bioethics beat is not in the area of abortion, but the recent release of undercover sting videos exposing Planned Parenthood’s business in body parts and the subsequent attempts to block the media from reporting on them call for attention from bioethicists. Since certain groups (the larger media outlets) have been pressured to not to report on this, I am linking independent news commentary about the videos. Some of the commentaries include a link to the videos. I am going to warn you that the videos, particularly the 3rd, 4th, and 5th videos contain graphic content. Also, I do not encourage watching these videos out of morbid curiosity. If you work in bioethics or medical ethics or are reporting on this, then it is important to watch the videos before commenting on them, to get the facts straight and sift what is being reported in the media. Others of you, may just want to watch the conversations and stop when the laboratory warning comes onto the screen.
I am linking articles from The Stream. Jay Richards is the executive editor. I have met him as well as one of writers. They both do good work and run more in these circles than I do.
The laws in question are in the article accompanying the 5th video link below (dated August 4), “The sale or purchase of human fetal tissue is a federal felony punishable by up to 10 years in prison or a fine of up to $500,000 (42 U.S.C. 289g-2). Federal law also requires that no alteration in the timing or method of abortion be done for the purposes of fetal tissue collection (42 U.S.C. 289g-1).”
However, it is also worth mentioning that the law does not direct our moral compass. It is the other way around. Our moral compass dictates what laws we pursue and what laws we vote on. And, in the past, particularly when you look into the history of bioethics and medicine, there have been some things that were legal but were still unethical.
“New Video Exposes Planned Parenthood Selling Body Parts from Partial-Birth Abortions” (July 14, 2015) This is the first Planned Parenthood video.
“Investigations into Planned Parenthood Announced by Congress, States” (July 15, 2015)
“2nd Undercover Video of Planned Parenthood Points Even More Strongly to Illegal Activity” (July 21, 2015) This is the second Planned Parenthood video.
“The Price of Fetal Parts” (July 23, 2015) This is an opinion editorial by Charles Krauthammer.
“How Will Planned Parenthood’s Media Shills Explain Away the Newest Undercover Video?” (July 28, 2015) This is the third Planned Parenthood video.
“Abortionist Admits ‘It’s a Baby’ in New Planned Parenthood Video” (July 30, 2015)
“5th Sting Video: Intact Fetuses ‘Just a Matter of Line Items’ for Planned Parenthood Mega-Center” (August 4, 2015) This is the fifth video.
Watchdog websites like Retraction Watch are not going out of business any time soon. It seems like there has been an uptick in the number of retractions in the peer-reviewed literature recently. Some have been high profile blunders, like the STAP stem cells case, while most are minor papers with issues of reproducibility, double-dipping, or image doctoring.
(See here for a New York Times article highlighting some of the most high-profile retractions in the last twenty years.)
There are three responses to the influx of retractions:
- Fraud and misconduct have always happened; we’re just better at catching it.
- The problem is in academia’s emphasis on “publish-or-perish.”
- This is an example of how science polices itself.
In my latest blog post at Salvo’s Signs of the Times I comment on the recently published research out of Nature that says scientists are very close to making a yeast strain that will convert glucose into morphine.
The Immortal Life of Henrietta Lacks
by Rebecca Skloot
Broadway Books, 2010
It was a time when donated blood was labeled “colored.” Hospitals were segregated. Consent laws were in flux, and cellular biology was a growing field. It was during this time that Henrietta Lacks, a young African-American mother living in Baltimore, visited Johns Hopkins University Hospital because she had a tumor in her cervix. When doctors went in to remove the tumor, they also took a sample to grow in a cell culture.
Genetically modifying adult cells is one thing. Genetically modifying an embryo is another. Why the difference?
This fundamental difference is what has many scientists in an uproar over research out of China in which scientists genetically edited a human embryo. Editing an adult’s (or a child’s) cells only changes the person who is receiving treatment. Editing an embryo, an egg, or sperm changes not only the person (or potential person in the case of gamete modification), but his or her entire family line.
The Terri Schiavo case was in the news for several years before she eventually died from dehydration on March 31, 2005. Admittedly, at the time it was a case that was only marginally on my radar. I was pursuing my undergraduate degree in chemistry when the news was buzzing about it, and I was neck-deep into my master’s degree when she eventually died.
What is artificial intelligence? It turns out there is a bit of a debate over what exactly defines “intelligence” and how we can know if something is artificially intelligent. There are some people who think that we have already achieved AI, citing Google’s algorithms or Apple’s Siri as examples. Critics say that these are merely data accumulators, not actual intelligence. The debate, it seems, is where exactly we draw the line between actual intelligence and being able to search through facts.
Before Indiana was in the news for the religious freedom act, the governor announced a public health crisis because an inordinate number of people in Scott County have contracted HIV through the use of shared needles. I reported on it, here, in Salvo Magazine‘s Signs of the Times.
Last week’s Nature was devoted to the results of the NIH’s Roadmap Epigenetics Project, marking the conclusion of this eight-year endeavor to investigate the “stuff” around (i.e., epi-) DNA that tells the genome what to do.
I have used the analogy in the past that nucleotides are like letters, codons are like words, sequences are like sentences, genes are like paragraphs, chromosomes are like books, and genomes are like a library. What does that make the epigenome? Marcus Woo, in his Wired article on the epigenome, says that “if the genome is a book, then the epigenome is like the post-it notes, dog-ears, and highlights that help you make sense of a particularly dense text.” In my example, if the genome is a library, perhaps the epigenome is the Dewy Decimal System?
Analogies aside, the epigenome provides significant details that had remained hidden within the non-coding portion of DNA. The Nature editorial “Beyond the Genome,” cites three insights that the Roadmap Epigenetics Project has brought concerning the epigenome:
- How the epigenome affects gene expression
- How the epigenome changes during stem-cell differentiation during normal development
- How the epigenome changes during disease
One area where epigenetics may help is in cancer research. Scientists believe that many cancers are due to malfunctions in the epigenome which affect where genetic mutations occur. According to the Nature editorial, the findings from the Roadmap Epigenetics Project confirmed that the epigenome does affect cancer-causing genetic mutations and furthermore, the cell type from which the cancer originated can be identified by looking at the epigenetic signature.
Scientists hope to gain additional insights into other diseases such as Alzheimer’s and Crohn’s disease.
My recent post on Salvo’s Blog, Signs of the Times, addresses the not-so-accurately-named “three-parent” IVF vote. The House of Commons in the UK approved a technique that allows scientists to replace the nucleus of one woman’s egg to with the nucleus of another woman’s egg, ostensibly to prevent genetically inherited mitochondrial disease. Read more here.
Here is a summary of some recent studies on Alzheimer’s disease.
Glial cells, from the Greek for “glue” are the new focus of neuroscientists looking for a way to combat Alzheimer’s disease. Two studies, one out of Stanford University and the other from Pennsylvania State University, report promising signs that activating the glial cells in mice with Alzheimer’s-like brains reverses memory loss and replaces neurons.
The first study, from Stanford, shows that a protein, EP2, stops the glial cells from working efficiently. Glial cells serve many roles in the brain, among them being the neurological equivalent of a housekeeper. Glial will clean up amyloid-beta plaques, which are found in the brains of Alzheimer’s patients. In mice in which EP2 is suppressed, the glial cells clean up the plaques which theoretically re-establishes nerve connections. Researchers believe that the presence and activation of EP2 protein might contribute to Alzheimer’s disease since this protein stops the housekeeping cells from doing their job.
The second study, from Penn State, researchers were able to form new neuronal cells from glial cells. They were only able to do this in a petri dish, but their preliminary results show improvement in mice.
It is only in the last several years that scientists have discovered the multiple jobs that glial cells perform. These preliminary results, while promising, are in mouse models. Success in mouse models in one step in multiple steps to eventually get to the clinical level. Also, particularly with complex systems like the brain, sometimes therapies do not readily translate from mouse models to primates or humans.
With those caveats in mind, research into glial cells is promising avenue for fighting these neurodegenerative diseases.
The Stanford research article in the Journal of Clinical Investigation is available for free online.
Related: “Study on Exaggerating Research Results”
In this week’s post at Salvo’s blog, Signs of the Times, I explore how America’s infatuation with productivity has lead to a skewed view of work and leisure.
To be a good writer, you have to be a good reader. I have found that reading from a variety of genres helps my writing, whether it is a technical piece or a fiction narrative. Since making “Best of” lists is a New Year’s tradition, I have compiled my top picks from books I read in 2014 with a couple of honorable mentions that I read over Christmas break at the end of 2013.
One of the tricky things about science writing is news cycles move quickly while research moves slowly. Research in the biomedical and health fields rarely involves one, big, “Eureka!” moment. Usually it starts with “hey that’s an interesting correlation we found,” followed by a “proof of concept” experiment, followed by one study in one kind of animal showing promise, and later more tests in more animals showing promise (or setbacks). Finally, when researchers are pretty sure that they have found something, they have to verify that it is true in humans, if they have been using animal models. This all takes time and the process can make for some boring headlines.
Science writers usually have to study the research well enough to explain it to a non-technical audience. But reading the original research article and following up on sources also takes time. Furthermore, if after all of that time and pushing against a deadline, you find that really the research only shows a loose correlation in mice studies, your story has lost its luster.
This leads to two temptations: 1) Exaggerating scientific findings to make them sound more interesting, and 2) Relying on press releases or other news articles without fact-checking to get the story out faster. The results of a BMJ study show that both of these temptation are problems in reporting biomedical and health-related research. The study looked at the content of Russell Group (UK) university press releases to see if they exaggerated the claims presented in the original, peer reviewed research paper and if exaggerated claims showed up in other news stories. They also looked at whether exaggerating research findings lead to more news sources picking up the story.
The study showed that of the 462 university press releases evaluated from biomedical or health-related fields, 40% contained exaggerated advice, 33% had exaggerated causal claims (i.e., claiming causation when the research only showed a correlation), and 36% contained exaggerated inference to humans from animal research. They used the original peer reviewed paper as a baseline with the caveat that some peer review papers may exaggerate claims, and they used conservative metrics to evaluate the press releases. Their numbers are likely an underestimate.
Additionally, the BMJ study found that when university press releases contained exaggerated advice, 58% of the news stories about the press release did too. Eighty-one percent of news stories contained exaggerated causal claims if the press release did, and 86% of news stories made exaggerated inferences to humans from animal research if the press release did as well. When the press release does not exaggerate research findings, only 17% of news stories offer exaggerated advice, 18% exaggerate casual claims, and 10% exaggerated the inference to humans from animal research. In other words, journalists are relying on the press releases for their information, and if the press release is inaccurate, then the news reports are too.
A Nature commentary on the research points out that the university press writers are not the only ones responsible here. Most universities have the principle investigator look over the press release before it is published, which means he or she either approved it without reading it or approved the exaggerations.Additionally, journalists are responsible for what they report, including fact-checking their sources.
This study is reminiscent an informal experiment conducted by Shane Fitzgerald, a sociology major at Dublin University, in 2009. He was taking a class on communications and wanted to see how a globalized, internet-dependent media dealt with accuracy in news. While taking the class, renowned composer,Maurice Jarre, died. He posted a fabricated quote on Wikipedia by the composer. He did not attribute the quote, and Wikipedia’s editors caught and removed it quickly. Unfortunately, Wikipedia did not remove it fast enough because several major media outlets, including The Guardian, published an obituary with Shane’s fabricated quote. He pointed out that Wikipedia did its job by removing the quote several times. The problem was that journalists were using the quote even though it did not have a reference or link.
Perpetuating a false quote is one thing; perpetuating bad biomedical and health information is another. Many people turn to these sources assuming that they are providing reliable information. When it comes to health-related research, people may make decisions based on what they think the latest research shows or the recommendations from the university that conducted the research. In the fast-paced news cycle, there is a responsibility to be truthful about health-related research, even if it makes for a less interesting story.
I have a new feature article in Salvo Magazine entitled “Dying to Feel Good: Modern Self-Realization & the Painkiller Addiction Epidemic.” This article is the culmination of a year of research on the subject of prescription pain medicine, opiate drug addiction, and heroin. I caught on to this topic as I was updating bioethics.com and noticed there were several news items on the widespread use and abuse of prescription pain medicine, perfectly legal drugs that were devastating families and entire communities.
As I dug into the topic, I found opiate drug abuse from prescription drugs skyrocketed after 1990. As it turns out, there are several contributing factors to today’s epidemic.
I gave a presentation on the topic at The Center for Bioethics & Human Dignity conference last June, and received some great feedback from medical health professionals. All of this came together in a piece that I hope will help people understand the complex factors contributing to the widespread abuse of prescription pain medicine.