April 22, 2014
A Loot at the Lives of American Nurses
(Washington Post) – Photographer and filmmaker Carolyn Jones created “The American Nurse” after publishing a coffee-table book on the subject two years ago, and the film builds on the same mix of powerful images with words of men and women whose lives are devoted to healing.
April 11, 2014
Deconstructing Dignity: A Critique of the Right-to-Die Debate, by Scott Cutler Shershow
(The Times Higher Education) – This is a highly topical book, in view of the intense debates taking place in many countries about the possible legalisation of assisted suicide and euthanasia (for example in Canada and France) or the modification of existing laws (for example in Belgium, where the euthanasia law was recently extended to minors). However, its title is slightly misleading: although Scott Cutler Shershow devotes a lot of attention to suicide, this analysis is insufficiently used as a starting point for discussing assisted suicide and voluntary euthanasia. The discussion on euthanasia is limited to involuntary euthanasia as practised, for example, by the Nazis.
April 8, 2014
New Documentary Opens Conversation about Death
(The Globe and Mail) – “My name is Cindy Cowan. I have late-stage ovarian cancer and I would like to have the choice in how I end my life.” Those words are spoken early in The Trouble with Dying (Vision TV, 10 p.m.), a terrific, thought-provoking new documentary about assisted suicide. Vision calls it “hard-hitting.” It is also fair and moving and guaranteed to make you think and rethink your impressions about the issue.
March 26, 2014
Hitler’s favorite American: “Biological Fascism” in the Shadow of New York City
(Salon) – Excerpted from ”Villains, Scoundrels, and Rogue: Incredible True Tales of Mischief and Mayhem.” Growing up in Charlottesville, Virginia, in the early 1900s, young Carrie Buck impressed those she met as serious and self-possessed, someone whose quiet demeanor hinted at a life filled with challenges. Of humble origins—her widowed mother had given her up to foster care as a child—the stocky, darkhaired girl didn’t let her difficulties get her down. She enjoyed reading the newspaper, liked to fiddle with crossword puzzles, and always made herself useful around the house. She was a bit awkward in social situations, but otherwise she was a thoroughly average teenager. No one had any reason to think differently of her. Then something terrible occurred that changed Carrie’s life forever.
The Machine: Director Interview
(The Telegraph) – Caity Lotz is an artificial intelligence in the process of coming alive. There are guns and disasters throughout her turn in new release The Machine, yet she’s optimistic about a future where the robots live among us. “I think artificial intelligence is not just possible, but inevitable. I don’t think there will be robots like my character straight away, but rather humans will slowly start to merge with computers and technology cyborg style,” she says.
March 21, 2014
Synthetic Aesthetics: Investigating Synthetic Biology’s Designs on Nature
(Times Higher Education) – Synthetic Aesthetics opens with an introduction to these ambitions from two leading lights of synthetic biology, Drew Endy and Alistair Elfick, and then examines them from a range of sceptical but stimulating viewpoints. We come to see the many ways the project blurs boundaries between nature and culture, living things and machines, science, art and design, biological and technological evolution.
March 20, 2014
5 Myths about Hospice Care
(Fox News) – My new book, Changing the Way We Die, co-authored by Sheila Himmel, lifts hospice out of the shadows. We explore its compassionate, holistic approach to end-of-life care through the stories of real patients like Rusty Hammer, their families and their doctors. At its best, hospice is more than a way to relieve the suffering of dying — it is a way to live.
March 10, 2014
Angel of mercy, angel of death
(New York Times) – Figures observed through frosted glass as they engage in semi-audible conversation: That mysterious tableau, which begins Valeria Golino’s film “Honey,” defines the detached sensibility of the title character. “Honey” (“miele” in Italian) is the code name for Irene, a fiercely free-spirited woman in the shadowy business of assisted suicide. Portrayed by Jasmine Trinca, an athletic gamin with adorably crooked teeth, Irene is connected to a loose network of contacts who direct her to terminally ill clients.
March 5, 2014
Synthetic Biology and Venter’s Life at the Speed of Light
Craig Venter’s book Life at the Speed of Light: From the Double Helix to the Dawn of Digital Life describes the completion of the first functioning organism with a completely synthetic genome and places this accomplishment within the context of the history of genetics. While several reviews can be found online, this article will look at the specific bioethics issues that arise in discussing Venter’s process of making a synthetic organism as well as his vision for a future where digital technology and biological information merge to potentially solve many of the world’s problems.
Venter’s goals are to determine a minimal genome necessary for life, create this genome in the lab, and create the necessary cellular machinery to operate the genome. In the book, he explores the definition of life, and feels that his research helps answer the question “What is life?”
Summary of the Process
Venter’s group began by synthesizing the genome of Phi X 174. Phi X 174 was the first virus genetically sequenced, so it was used as a test subject for the Venter group’s process for synthesizing long pieces of DNA in the laboratory. They wanted to use this well-studied genome to double check that their process was working. At that time, scientists had not successfully made long sequences of DNA in the lab without the DNA breaking or introducing errors. By 1999 the Venter group was able to successfully re-create the DNA sequence for Phi X 174 using their method.
While the media may have touted the construction of the Phi X 174 genome as “creating life in the lab” the Venter group did not consider it so because Phi X 174 is a virus, not a cellular organism. Venter considered this accomplishment merely one step toward the end goal of making an actual synthetic organism.
In 2007 the Venter group was able to reconstruct the genome of M. genitalium, a well-studied bacterial organism. This established a method by which they would then construct a genome that had never been constructed in the laboratory before. Additionally, they demonstrated that the genome of one bacterial organism can be placed into the cell of a different species of bacteria, which had its DNA removed, and the cell will behave according to the identity of new DNA. In the end, they synthesized a M. mycoides genome and placed it within a M. capricolum cell. Final tests showed that the organism behaved like a M. mycoides cell (Venter, 123).
Ref: “Creation of a Bacterial Cell Controlled by a Chemically Synthesized Genome” Science
After the preliminary studies with Phi X 174, Venter funded a private review board to investigate the ethics and implications of making life in the lab. This group was headed by Arthur Caplan, at the time working at the University of Pennsylvania. The review was published in Science as “Ethical Considerations in Synthesizing a Minimal Genome.”
Additionally, because the Venter group had constructed a virus, and there were political issues associated with the potential for other countries making synthetic viruses, completion of the Phi X 174 also sparked an ethics review by the government’s National Science Advisory Board for Biosecurity on dual-use research.
Then, in 2010, when the J. Craig Venter Institute announced that they had created “the world’s first self-replicating synthetic (human-made from chemical parts) genome in a bacterial cell of a different species, President Obama had the Presidential Commission for the Study of Bioethical Issues evaluate the research and its implications. The Commission published a document entitled “New Directions: The Ethics of Synthetic Biology and Emerging Technologies” evaluating the ethical issues surrounding Venter’s work.
Both the independent review board and the Presidential Commission for the Study of Bioethical Issues brought up several key points, one of the more important of them is whether Venter actually created life in the lab. Both they and Venter point out that synthetic biology is really a form of genetic engineering (Venter, 83), so many of the same ethical concerns that were considered when the human genome project was happening apply to synthetic biology as well.
There are, however, a few additional bioethics issues that are specific to this technology:
- The Venter group did develop a robust approach to making large sequences of DNA in the lab by inputting the desired code into the computer. While some question whether this technology can really be used to make a functioning bacterial cell, it does have implications for creating a synthetic virus. Viruses are rather simple organisms that consist of a container for holding DNA, the actual viral DNA (or RNA) that invades a cell, and sometimes, a virus will have some mechanism for inserting itself into a cell. The concern is that this technology may be used for bioterrorism. This is why the government board on dual-use technologies evaluated the research. While Venter sees his work as solving more problems than it creates, he considers this one of the key areas of concern (Venter, 155).
- Because the bacterial cells with the synthetic DNA are capable of replication, there is potential to introduce synthetic organisms, ones without precursor parents, into the environment. Unlike naturally-occurring organisms, these do not have an ancestral history. Venter lauds this as an accomplishment because, as he stated in the beginning of the book, he sees the scientific endeavor as understanding and controlling life (Venter, 8), and introducing new organisms into the environment is a type of control. However, the President’s Commission says that this can also be cause for concern. Indeed, they question whether synthetic organisms, once released into the wild, will be controllable “We are far from being proficient speakers of the language of life, and our capacity to control synthetic organisms that we design and release into the world is promising but unproven” (Commission, 22).
- Synthetic biology is a changing field, and while ethical recommendations and considerations have been made, the President’s Commission believes that dialog, critique, and public education are important for this changing field (Commission, 15-16). To that end, the Commission developed some guiding principles that Venter mentions but does not discuss in detail in his book: 1) public beneficence, 2) responsible stewardship, 3) intellectual freedom and responsibility, 4) democratic deliberation, and 5) justice and fairness. (See The Commission’s report for details on each of these.)
- Finally, there is a question of how to deal with patents. While the process to make a synthetic organism may be patentable, are synthetic genomes able to be patented? They do not fall under the category of “natural phenomena” because they were technically engineered. However, as we saw with the Myriad Genetics’ case, one cannot patent human genes.Additionally, there may be a question of how similar is too similar. In the case of Venter’s research, the synthetic genes are modeled on naturally occurring genes, but may have slight differences. This also brings up the question of whether living things can be patented at all, assuming Venter’s group did make a novel living organism in the lab.
While the goal of this article is to address bioethics issues, there are several philosophical issues that play an important role in Life at the Speed of Light that ought to be mentioned. The book begins by contemplating what the definition of life is. According to Venter, his experiment answers this question by showing that life is information, namely DNA.
A key theme throughout Life at the Speed of Light is Venter’s exasperation with vitalism. In this case, he is referring to the scientific use of the term “vitalism,” a term that was originally used to describe the belief that cells have a vital force that cannot be measured empirically. Venter, however, expands the term to mean a belief that life is anything more than chemistry (Venter, 17 and 18). In other words, he uses an antiquated notion to encompass anything other than his definition of life. For Venter, the information and complexity seen in the cell emerges out of chemical properties, and his group’s ability to replace the genome of one organism with another serves, at least from his point of view, as definitive proof that vitalism is an antiquated notion based on poor science:
The other major impact of the first genome transplants was that they provided a new, deeper understanding of life. My thinking about life had crystallized as we conducted this research. DNA was the software of life, and if we changed that software, we changed the species, and thus the hardware of the cell. This is precisely the result that those yearning for evidence of some vitalistic force feared would come out of good reductionist science, of trying to break down life, and what is meant to be alive, into basic functions and simple components. Our experiments did not leave much room to support the views of the vitalists or of those who want to believe that life depends on something more than a complex composite of chemical reactions. (Venter, 109)
Venter is uninterested in the implications of a purely reductionistic view of life and expressed surprise that the ethics board that he funded spent time in their Science paper discussing the religious and philosophical implications (Venter, 81). For Venter, ethics appears to be about permissibility. Is he doing anything illegal or that will cause religious groups to protest? The ethics committee said that they “could not find references in the Bible or other religious writings that forbade the creation of new forms of life” (Venter, 79). For Venter, this signified that he did his due diligence to appease those who may have philosophical or religious concerns about his work.
Finally, Venter addresses his critics’ claims that he did not actually make life in the lab, because he used already existing templates and cellular machinery (See, for example, page 32 of the Commission’s report). Some contend that he did not make life “from scratch.” Venter appropriately points out the ambiguity of the phrase, “from scratch,” and questions what his detractors would consider a completely synthetic organism (132). However, he does not adequately address the fact that the two species of bacteria were specifically chosen because their genetics were similar and therefore, the cellular machinery (organelles and proteins) used to read the DNA should be compatible between one species and the other. Furthermore, his group specifically chose M. mycoides as the DNA donor and M. capricolum as the host cell because they knew from other studies that the experiment does not work if M. capricolum is the DNA donor and M. mycoides is the host (Venter, 102). He likens the feat to trying to run PC software on a Mac (Venter, 112), but really, it is more like trying to get a Word document on a PC to open in the Office Program for Mac. However, in responding to his critics, Venter downplays the role of cellular machinery in order to advance the narrative that DNA is the essence of life.
This article is meant to address the book by Venter, rather than the entire field of synthetic biology. It is difficult to write about the bioethics issues in Life at the Speed of Light because Venter’s goal is to discuss the process and laud the benefits. It downplays the concerns, but assures the reader that the concerns have been adequately addressed.
Most disconcerting about the book is Venter’s disregard for any views contrary to his own or that critique his work. Venter discusses his own position with an air of rational superiority while he, himself, makes un-objective philosophical claims. He believes in the moral and intellectual superiority of scientists, and presumes that if scientists are doing synthetic biology, it can only serve for the public good and for furthering progress. His goal is to convince the public of the benefits of synthetic biology. While the book seems educational in nature, it is not so much about empowering the public to decide whether synthetic biology is safe, but rather to show them that it really is all under control.
Venter, J. Craig. Life at the Speed of Light: From the Double Helix to the Dawn of Digital Life. New York: Viking Penguin, 2013.
February 26, 2014
Protecting the nanotechnology workforce
(Free ebooks) – Nanotechnology—the manipulation of matter on a near-atomic scale to produce new materials and devices—has the ability to transform many industries, from medicine to manufacturing, and the products they produce. By 2020, the National Science Foundation estimates, nanotechnology will have a $3 trillion impact on the global economy and employ 6 million workers in the manufacture of nanomaterial-based products, of which 2 million may be manufactured in the United States [NSF 2011]. Nanomaterials may present new challenges to understanding, predicting, and managing potential health risks to workers.
February 21, 2014
Caring for the Alzheimer’s Caregiver
(New York Times) – Mr. Divinigracia could easily have been the subject of one of the 54 stories in a new book, “Support for Alzheimer’s and Dementia Caregivers: The Unsung Heroes,” by Judith L. London. Dr. London is a psychologist in San Jose, Calif., whose first book, “Connecting the Dots: Breakthroughs in Communication as Alzheimer’s Advances,” broadened her contacts with family and professional caregivers facing, and often solving, everyday problems related to dementia.
February 18, 2014
Hospice Voices: Lessons for Living at the End of Life
(Nursing Times) – Eric Lindner is a Hospice volunteer in US and this book charts his experiences in this role over the last four years via a series of carefully crafted and sensitively written vignettes. He has no background in health care and approaches his encounters in a modest and forthright manner that comes across strongly in the text. It’s written in a mix of first and third person narrative, which helps keep the story telling alive to the reader, yet gives it the feel of a short novella rather than an informative learning text. As such the reader is given a detailed insight into the lives, loves and tragic losses of these people and their complex family circumstances.
February 5, 2014
Handbook of personalized medicine: Advances in nanotechnology, drug delivery, and therapy
(Nanowerk News) – This book compiles multidisciplinary efforts of recent advancements in pharmacology, nanotechnology, genomics, informatics and therapeutics aiming to conceptualize the environment in research and clinical setting that creates the fertile ground for the practical utility of personalized medicine decisions and also enables clinical pharmacogenomics for establishing pharmacotyping in drug prescription, i.e. the individualized drug and dosage scheme selection based on clinical and genetic data.
February 3, 2014
Nanotechnology in a nutshell: From simple to complex systems
(Nanowerk) – A new high-level book for professionals from Atlantis Press providing an overview of nanotechnologies now and their applications in a broad variety of fields, including information and communication technologies, environmental sciences and engineering, societal life, and medicine, with provision of customized treatments.
January 23, 2014
Government should not legalise assisted suicide, warns Sunderland academic
Governments around the world should not legalise assisted suicide, a Sunderland academic has warned in a new book. Assisted Suicide: The Liberal, Humanist Case Against Legalisation, written by Dr Kevin Yuill, Senior Lecturer in American History at the University of Sunderland, details the arguments for and against legalisation of euthanasia and assisted suicide. (News-Medical)
January 20, 2014
The good, the bad and the morality: New book traces history of American medical ethics
The author of American Medical Ethics Revolution and The Cambridge World History of Medical Ethics, Baker spent the past three years writing his latest book. But its roots date back decades, when, in his mid-30s “with a goatee and just out of jeans,” he joined the faculty at Wayne State University in Detroit. (Union College)
January 16, 2014
Sundance film follows woman’s worst fear: Does she have Huntington’s disease?
Marianna Palka, who left Scotland to pursue a career in filmmaking in the United States, knew she had a “50-50″ chance of getting Huntington’s disease – a rare, but devastating genetic disease that has been described as Parkinson’s, Alzheimer’s and ALS, all rolled into one. It began to destroy her father his late 30s, so Palka, now 32 and symptom-free, decides to find out if she, too, has the genetic mutation that will rob eventually her of her mobility and her mind. (ABC News)
In ‘Transcendence’, Johnny Depp plays a brilliant scientist whose mind is allowed to live on and evolve through artificial intelligence, after his body is attacked. (U.S.A. Today)
January 14, 2014
‘American Psychosis’ attacks mental health care
“How the Federal Government Destroyed the Mental Illness Treatment System”: That subtitle is the opening shot across the bow in this jeremiad of a book by the psychiatrist Dr. E. Fuller Torrey. It could just as well have read: “How a group of well-intentioned, starry-eyed idealists made a hash of mental health care.” (New York Times)
December 28, 2013
A nurse gains fame in the days of polio
But thanks to “Polio Wars: Sister Kenny and the Golden Age of American Medicine,” a new biography by Naomi Rogers, a Yale University medical historian, readers can learn why she gained such fame. And while Ms. Kenny’s work was mostly in polio, which has nearly been eradicated, her emphasis on the care of individual patients and close bedside observation could not be more relevant in an era dominated by randomized controlled trials. (New York Times)
December 26, 2013
Transhumanism will change everything
This is spooky stuff, but it’s real and it’s already happening. Humans are augmenting themselves with computers and technology that will expand their abilities, and it’s going to get more advanced and morally complex as time passes. Imagine transplanting your entire consciousness into a computer. That’s a new type of immortality. Imagine having a robotic exoskeleton that’s not just part of your body — it is your body. That’s a new type of existence entirely. An excellent documentary called “Bionics, Transhumanism, And The End Of Evolution” takes a look at the endless wonder and potential of what happens when blood-and-meat humanity meets steel-and-silicon technology. (San Francisco Gate)