What is Bioethics?

Image Source: Center for Bioethics and Human Dignity

The CRISPR Drawer is a bioethics blog. But what is bioethics? 

First and foremost, bioethics is a subfield of ethics, which is a branch of philosophy concerned with determining what kinds of human conduct are right/wrong, moral/immoral, permissible/impermissible, or justified/unjustified. Its concerned with what humans "should" or "should not" do.

Stick "bio" to the front of "ethics," and you have "bioethics." "Bio" comes from the Greek bíos meaning "life," and can pertain to living organisms (like in biology), or to the course of human life (like in biography). (1)

If bioethics somewhat-literally translates to "the ethics of life," wouldn't that just be. . . ethics? Not quite, because bioethics, as an academic discipline, has a more particular meaning.

Defining bioethics and its issues
Philosophy writer Lewis Vaughn, in the textbook Bioethics: Principles, Issues, and Cases, defines bioethics as: "Applied ethics focused on health care, medical science, and medical technology." (2)

The Center for Bioethics and Human Dignity defines bioethics as "a branch of ethical inquiry that examines the nature of medical, scientific, and technological discoveries and their subsequent responsible use, with particular emphasis upon their moral implications for individuals and our common human humanity" [sic] (3).

Monash University's bioethics program describes bioethics as ethics that focuses on "the growth of scientific knowledge and technical ability in medicine, genetics and the biological sciences" as well as "the healthcare field." (4)

Based on the above, bioethics can be understood as a discipline concerned with ethical questions in medicine, biological research, genetics, biotechnology, and healthcare.

Ethical issues in medicine and healthcare can include questions about who can make medical decisions on behalf of patients, questions about the limits of patient autonomy, or questions about the scope of a doctor's oath to "do no harm." Beyond the clinic or hospital, there are also bigger societal questions about healthcare and medicine, such as questions about what kinds of medical procedures people should have a right to access or questions about how healthcare should be paid for.

Ethical issues in biological research or biotechnology can include the use of genome editing and cloning in organisms, experimenting with human embryos or stem cells, or designing clinical trials for new medicines. These concerns often focus on the bigger impact to humanity, and how such research or technological developments will benefit or harm society.

While attempting to define bioethics, its important to note that its not easy to conclusively draw defining lines between what "is" or "isn't" bioethics. Bioethics can concern itself with issues that don't fit neatly into the above categories, such as animal rights. (5)  There are also issues not generally considered to be covered by bioethics, such as climate change, that some argue should be included. (6)  Bioethics is an umbrella category that can cover or partially-cover many different topics, and the boundaries of bioethics can be always be expanded into new territory.

(For more examples of issues of interest in bioethics, the list of issues in the Bioethics article on Wikipedia and the blog archive at Bioethics.net can be helpful starting points!)

So now that bioethics has been somewhat defined, how do bioethicists ultimately decide what is right or wrong? A lot can go into ethical analysis, but here I will focus on two parts: moral theory, and research.

Moral theory
A moral theory, simply defined, tries to define or outline right or wrong action by providing a kind of moral criteria.

Utilitarianism focuses on the consequences of actions, and says that right or wrong action depends on whether the consequences maximize overall well-being in the world. (7)

Principlism focuses on four principles—autonomy, beneficence, non-maleficence, and justice—and argues that right action is guided by adherence to these principles. (8)

Deontological theories focus on moral duties or moral norms, and argues that right action is determined by acting in accordance with these duties or norms. (9)

There are other many other moral theories in addition to those mentioned above, and there can also be multiple versions of a single moral theory.

Research in bioethics
Ethical analysis relies strongly on philosophical inquiry and theory, but examining the ethics of an issue wouldn't be complete without additional background research.

If the ethical concern is a technology, understanding how it works, how it would be used, and how safe or effective it is matters a great deal when we question whether its use should or shouldn't be permitted.

If the ethical concern is a hospital policy towards patients, understanding the needs of the patient, the doctor, the healthcare provider, and the hospital could help determine whether the policy is fair.

If the ethical concern is a proposed bill regulating some aspect of medicine or healthcare, knowing the legal context, the detail and scope of the bill, and the potential consequences of its implementation could offer insight when asking whether the bill should or shouldn't be endorsed.

The additional background and contextual questions surrounding ethical issues can sometimes only be answered by science, law, history, medicine, or social science, which can make bioethics somewhat interdisciplinary in practice.

What is bioethics?

• Bioethics is concerned with answering ethical questions in biological research, medicine, biotechnology, and healthcare.

• Bioethics can be defined by its tradition, but can always expand into new areas.

• Bioethics often uses moral theories to analyze the ethics of a given issue.

• Bioethics may incorporate research from many different fields in order to formulate a fully thought-out ethical analysis.

This concludes my brief introduction to bioethics, but since this is a bioethics blog, there will certainly be more to come!

Have anything to add? Additional sources, helpful and relevant resources, and professional insights are welcome! Share in the comments below.


SOURCES

(1) Dictionary.com. [Online]. (n.d.). Bio-. [Accessed Jan 03, 2017]. Available at: http://www.dictionary.com/browse/bio-.

(2) Vaughn, L. (2013). Bioethics: Principles, Issues, and Cases. Second Edition. Oxford: Oxford University Press. 

(3) Center for Bioethics and Human Dignity. (n.d.). FAQs. [Online]. [Accessed Jan 03, 2017]. Available at: https://cbhd.org/about-cbhd/faqs.

(4) Monash University. (2016). Bioethics. [Online]. [Accessed Jan 03, 2017]. Available at: https://www.monash.edu.au/pubs/handbooks/aos/bioethics/ug-arts-bioethics.html.

(5) Blumenthal-Barby, J. S. (2014). Philosopher Calls for End to Animal Experimentation (And More): Is There a "Reasonable" Conception of Animal Rights? Bioethics.net Blog. [Online]. [Accessed Jan 03, 2017]. Available at: http://www.bioethics.net/2014/05/philosopher-calls-for-end-to-animal-experimentation-and-more-is-there-a-reasonable-conception-of-animal-rights/.

(6) Macpherson, C. C. (2013). Climate Change is a Bioethics Problem. Bioethics. [Online]. 27(6), pp. 305-308. [Accessed Dec 30, 2016]. Available at: http://onlinelibrary.wiley.com/doi/10.1111/bioe.12029/full.

(7) Savulescu, J. and Birks, D. (2012). Bioethics: Utilitarianism. eLS. John Wiley & Sons, Ltd: Chichester, pp. 1-7. [p. 1]

(8) Beauchamp, T. L. (2010). The Four Principles Approach to Health Care Ethics. In: Beauchamp, T. L. ed. Standing on Principles: Collected Essays. Oxford: Oxford University Press, pp. 35-49.

(9) Alexander, L. and Moore, M. (2016). Deontological Ethics. In: Zalta, E. N. ed. The Stanford Encyclopedia of Philosophy. 2016 Winter Edition.  [Online]. [Accessed Jan 03, 2017]. Available at: https://plato.stanford.edu/entries/ethics-deontological/#DeoThe.

Name change!

I first conceived of this blog when I discovered that you could buy simple CRISPR kits online.

My first thought: I could buy CRISPR online and do genome editing experiments from my kitchen??

My second thought: How fun would it be to write about this, as a bioethicist?

My third thought: I'm making a blog, and I'm calling it, "The CRISPR Kitchen."

I absolutely loved the name I came up with. It had alliteration, it was short and catchy, and the word "kitchen" elicited mental images of DIY home experiments to cook up something new and interesting. But then I discovered that there is another website called "CRISPR Kitchen". . .

After about two weeks of struggling with what to do about the name conflict, it became obvious that a name change was necessary, and that this moment in time (just starting out) was the best time to do it.

And so I present to you my blog in its new form: "The CRISPR Drawer."

As disappointed as I am in the loss of the name I loved so much, the new name is starting to grow on me. Its still linked to my much-loved kitchen metaphor of DIY experimentation and research, and its literal in that I hope to have a CRISPR experiment in my actual refrigerator in the near future.

I'm also hoping that the name change will fit better with the direction I hope to take my writing; I still plan on experimenting, but I also hope to write about other topics beyond CRISPR that are connected to genome editing.

CRISPR Timeline

To understand some of the hype surrounding CRISPR, what has it actually accomplished thus far?

The development of CRISPR

1987
CRISPRs are discovered by Japanese scientists as "unusual structures" in E. coli genomes. (1)

2002
The term CRISPR, coined by researcher Francisco Mojica, is used in print for the first time. (2)

2008
DNA is identified as the target molecule of CRISPR. (2)

2012
Jennifer Doudna and Emmanuelle Charpentier are attributed with developing CRISPR-Cas9 as a genome editing technology.* (3)

January 2013
Feng Zheng is attributed with developing CRISPR-Cas9 as a genome editing technology.* (2)

*There is currently a patent battle between the Broad Institute of MIT and Harvard (Feng Zheng's affiliated institution) and University of California Berkeley (Jennifer Doudna's affiliated institution) over who has the rights to CRISPR-Cas9 gene editing technology, creating complications in giving credit for the discovery. Learn more about the patent dispute at BioNews. (4)

CRISPR Highlights

August 2013
The first genetically modified plants using CRISPR are performed in rice. (5)

January 2014
The first primates to be genetically modified with CRISPR are born in China. (6)

September 2014
U.S. scientists use CRISPR to prevent muscular dystrophy in mice. (7)

April 2015
Chinese scientists use CRISPR in experiments on nonviable human embryos for the first time. (8)

May 2015
American researchers use CRISPR to identify new targets for cancer drugs. (9)

July 2015
American scientists edit human T-cells using CRISPR. (10)

October 2015

• Chinese scientists create genetically modified dogs with increased muscle mass. (11)
• American researchers use CRISPR to edit over 60 genes in pig embryos. (12)

November 2015
Chinese scientists use CRISPR to edit goat embryos to have increased muscle mass and longer fur. (13)

February 2016
U.S. researchers use CRISPR to correct a genetic mutation that causes blindness. (14)

April 2016
Chinese scientists use CRISPR to edit nonviable human embryos for a second time. (15)

June 2016 
American researchers use CRISPR in experiments to create chimeric part-pig, part-human embryos. (16)

September 2016 

• Chinese scientists use CRISPR to successfully shrink tumors in mice. (17)
• A Swedish scientist uses CRISPR for first time to edit viable, healthy human embryos. (18)
• A Swedish scientist eats a pasta dish with CRISPR-modified cabbage, in what may have been the first-ever CRISPR meal. (19)

October 2016
U.S. scientists have success in correcting sickle cell anemia mutations in mice with CRISPR. (20)

November 2016

• U.S. scientists partially restore vision in blind rats using CRISPR. (21)
• Chinese scientists inject humans with CRISPR-modified immune cells for the first time in a lung cancer clinical trial. (22)

Have anything to add? Additional sources, helpful and relevant resources, and professional insights are welcome! Share in the comments below.


SOURCES

(1) Fitzpatrick Dimond, P. F. (2013). CRISPR Madness. Genetic Engineering & Biotechnology News. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.genengnews.com/.

(2) The Broad Institute. (n.d.). CRISPR Timeline. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.broadinstitute.org/what-broad/areas-focus/project-spotlight/crispr-timeline.

(3) Doudna, J. (2015). How CRISPR Lets Us Edit Our DNA. [Online]. TEDGlobal>London, September 2015, London. [Accessed Dec 19, 2016]. Available at: https://www.ted.com/talks/jennifer_doudna_we_can_now_edit_our_dna_but_let_s_do_it_wisely.

(4) Haque, A. (2015). CRISPR Gene Editing Patents Disputed. BioNews. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.bionews.org.uk/page_525601.asp.

(5) Feng, Z., Zhang, B., Ding, W., et al. (2013). Efficient Genome Editing in Plants Using a CRISPR/Cas System. Cell Research, 23(10), pp. 1229-1232.

(6) Rojahn, S. Y. (2014). Monkeys Modified With Genome Editing. MIT Technology Review. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.technologyreview.com/s/523986/monkeys-modified-with-genome-editing/.

(7) Long, C., McAnally, J. R., Shelton, J. M., et al. (2014). Prevention of Muscular Dystrophy in Mice by CRISPR/Cas9-mediated Editing of Germline DNA. [Online]. Science, 345(6201), pp. 1184-1188. [Accessed Dec 19, 2016]. Available at: http://science.sciencemag.org/content/345/6201/1184.full.

(8) Kolata, G. (2015). Chinese Scientists Edit Genes of Human Embryos, Raising Concerns. The New York Times. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.nytimes.com/2015/04/24/health/chinese-scientists-edit-genes-of-human-embryos-raising-concerns.html?_r=0.

(9) Ghangrekar, I., and Ochert, A. (2015). CRISPR Reveals New Cancer Drug Targets. BioNews. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.bionews.org.uk/page_525902.asp.

(10) Farley, P. (2015). In CRISPR Advance, Scientists Successfully Edit Human T Cells. University of California San Francisco. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.ucsf.edu/news/2015/07/131146/crispr-advance-scientists-successfully-edit-human-t-cells.

(11) Regalado, A. (2015). First Gene-Edited Dogs Reported in China. MIT Technology Review. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.technologyreview.com/s/542616/first-gene-edited-dogs-reported-in-china/.

(12) Reardon, S. (2015). Gene-Editing Record Smashed in Pigs. Nature. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.nature.com/news/gene-editing-record-smashed-in-pigs-1.18525.

(13) Larson, C. (2015). China's Bold Push Into Genetically Customized Animals. Scientific American. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.scientificamerican.com/article/china-s-bold-push-into-genetically-customized-animals/.

(14) Bhangra, K. S. (2016). CRISPR Corrects Mutation That Causes Blindness. BioNews. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.bionews.org.uk/page_611283.asp

(15) Pascual, K. (2016). Chinese Scientists Edit Genes of Human Embryos For the Second Time. Tech Times. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.techtimes.com/articles/149281/20160412/chinese-scientists-edit-genes-of-human-embryos-for-the-second-time.htm.

(16) Davis, N., and Rawlinson, K. (2016). Scientists Attempting to Harvest Human Organs in Pigs Create Human-Pig Embryo. The Guardian. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.theguardian.com/science/2016/jun/05/organ-research-scientists-combine-human-stem-cells-and-pig-dna.

(17) Özkaya, O. (2016). CRISPR Shrinks Tumors in Mice. BioNews. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.bionews.org.uk/page_698685.asp.

(18) Saey, T. S. (2016). New Era of Human Embryo Gene Editing Begins. ScienceNews. [Online]. [Accessed Dec 19, 2016]. Available at: https://www.sciencenews.org/article/new-era-human-embryo-gene-editing-begins.

(19) Cohen, J. (2016). Did a Swedish Researcher Really Eat the First CRISPR Meal Ever Served? Science. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.sciencemag.org/news/2016/09/did-swedish-researcher-eat-first-crispr-meal-ever-served.

(20) Gregory, S. (2016). CRISPR Success in Repairing Sickle Cell Anaemia Mutation. BioNews. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.bionews.org.uk/page_714286.asp.

(21) Waldron, P. (2016). CRISPR Partially Restores Sight in Blind Rats. BioNews. [Online]. [Accessed Dec 09, 2016]. Available at: http://www.bionews.org.uk/page_728876.asp.

(22) Cyranoski, D. (2016). CRISPR Gene-Editing Tested in a Person for the First Time. Nature. [Online]. [Accessed Dec 19, 2016]. Available at: http://www.nature.com/news/crispr-gene-editing-tested-in-a-person-for-the-first-time-1.20988.

Who am I, and what am I doing here? (Welcome to the blog)

CRISPR-Cas9    Photo credit: McGovern Institute for Brain Research at MIT

What if we had the ability to cure all genetic diseases, or design how our children will look before they are born? What if we could give our crops and livestock stronger resistance against pests and disease or give superhuman abilities to ordinary humans?

I am a bioethicist.

From the comfort of my armchair, I spend a lot of time thinking about the ethics and morality of different practices related to human life and health. As science continues to develop new technologies that feel straight out of science-fiction, there will always be new and interesting ethical questions arising at the same pace. 

I'm interested in thinking about the future; about how technology is changing society and humanity, and about whether these changes may be good or bad. Questions such as the ones italicized above are of particular interest to me, and are also questions that often come up when discussing the genome editing technology CRISPR-Cas9.

Genome editing is not new, but the CRISPR-Cas9 system (developed in 2012) is cheaper, easier to use, and more precise than its predecessors (1)(2). CRISPR has been said to have created a "new era" for molecular biology with incredible potential for editing the genetic code of organisms (3).

With such potential, what new doors will be opened for the future of genome editing? What will CRISPR be used for? Who will be able to use it? What are the health applications or dangers? How will it be regulated? Will it positively or negatively impact society?

Many of these questions have been asked before, so instead of continuing to ask questions from the armchair, I'm looking for new ways to add to or expand the conversation.

I am a bioethicist who wants to open the ethical conversation to those outside of academia and science.

I had never heard of CRISPR until I began studying for my master's in bioethics, and I don't come across discussions of CRISPR often (well. . . ever) in my day-to-day life. Most of my friends and family have still never heard of CRISPR. Part of me is surprised, because if a new era of genome editing is swiftly becoming part of our future, shouldn't we all be talking more about it? But when I consider how the CRISPR news that does manage to make it onto my Facebook news feed isn't often intelligible to non-scientists such as myself, maybe I shouldn't be so surprised that everyone isn't talking about it.

When I tried to learn more about what CRISPR was and how it worked, I was immediately alienated by the language of molecular biology. Even Wikipedia, the layman's go-to website for simple and easy explanations, sounded more like a graduate-level class: "Clustered regularly interspaced short pallindromic repeats (CRISPR, pronounced crisper) are segments of prokaryotic DNA containing short repetitions of base sequences" (4).

This then lead to searching "pallindromic," "prokaryotic," and "base sequences," and encountering the same problem of feeling like I was reading a whole other language. It's no one's fault that CRISPR is so hard to understand; it makes sense that to understand a genome editing technology, one must also have a grasp on genomes and their parts. One of my goals is to seek out resources that break these concepts into easier-to-understand pieces for those (like me) without a degree in molecular biology, and perhaps compile my research into my own CRISPR resources. This is because. . .

I am a bioethicist that wants to understand the science behind the technology.

To explore ethical questions about any technology, it is usually very important to understand the science behind it. From vaccines, to cloning, to stem cell research. . .  how accurate will our moral opinions be if we don't have a solid understanding of how the technology works, how it is made, how it is tested, or how it is used?

Imagine thinking about the ethics of performing a clinical trial for a genome modification in human beings using CRISPR. Our ethical judgement about supporting such a test may hinge greatly on facts about how effective and safe CRISPR has been shown to be in past experiments.

Where does CRISPR come from? How does it work? How well does it work? What does it do to the genome? What are the risks? The answers to these questions have the power to shift how we make ethical judgments about CRISPR's use, which makes knowing the science an important part of bioethics.

I am also a bioethicist that wants experience working closely with the technology I'm writing about.

Seeing or hearing about what it is like to use any technology from those who experience it first-hand can also be an important part of exploring a technology's ethics. Women acting as surrogates will have unique perspectives about whether carrying and delivering another person's child could be inherently exploitative, and doctors who have experience working with dying patients may have insightful input on how the ethics of assisted suicide can be complicated by hospital policies.

What have these "insiders" seen or witnessed that "outsiders" have not? What do insiders know about the context or setting in which they work? How do they feel about the impact and consequences of their work? This first-hand experience or insider knowledge can provide information or perspectives highly relevant for a full analysis of the ethical question.

Those with "first-hand" experience of working with CRISPR range from distinguished scientists working in labs around the world to amateur "biohackers" experimenting with CRISPR in garages and basements. (And with CRISPR kits and DIY classes available, I could potentially get my own first-hand experience.) I hope to discover as many perspectives as I can, and time will tell what I am able to research and put in writing.

Who am I, and what am I doing here?

I am a bioethicist, and I'm here to learn more about the science of CRISPR, learn more from those who work with CRISPR, and leave my armchair to explore the ethics of CRISPR as it is being used in the real world. I'll be sharing the things I know, researching the things I don't, and writing about my discoveries in straightforward terms to (hopefully) encourage people outside of science and academia to join the ethical conversation and become more interested in learning about CRISPR.

Welcome to the blog. . .


Have anything to add? Additional sources, helpful and relevant resources, and professional insights are welcome! Share in the comments below.


SOURCES


(1) Ledford, H. (2015). CRISPR, the Disrupter. Nature, 522(7554). [Online]. [Accessed December 02, 2016]. Available at: http://www.nature.com/news/crispr-the-disruptor-1.17673.

(2) Nuffield Council on Bioethics. (2016). Genome Editing: An Ethical Review. Nuffield Council on Bioethics: London. Available at: http://nuffieldbioethics.org/project/genome-editing/ethical-review-published-september-2016/.

(3) Reis, A., Hornblower, B., Robb, B., and Tzertziniz, G. (2014). CRISPR/Cas9 and Targeted Genome Editing: A New Era in Molecular Biology. New England BioLabs Inc. [Online]. [Accessed December 01, 2016]. Available at: https://www.neb.com/tools-and-resources/feature-articles/crispr-cas9-and-targeted-genome-editing-a-new-era-in-molecular-biology.

(4) Wikipedia. (n.d.). CRISPR. [Online]. [Accessed Dec 01, 2016]. Available at: https://en.wikipedia.org/wiki/CRISPR

Coming soon!