User:Kyreikal/sandbox

Altered Inheritance: CRISPR and the Ethics of Human Genome Editing

Replace with Cover
Author	Françoise Baylis
Language	English
Genre	Popular Science, Bioethics
Published	2019 (Harvard University Press)
Publication date	September 17, 2019
Media type	Print (Hardcover, eBook)
Pages	304 (Hardcover), 287 (eBook)
ISBN	978-0674976719

Altered Inheritance: CRISPR and the Ethics of Human Genome Editing is a book by bioethicist François Baylis in 2019. Baylis writes about the debate around human genome editing and the ethical implications. She writes about current events involving CRISPR technology and the way they are shaping the debates about regulations on human gene modification. The babies born in China after having CRISPR modifications to give resistance to HIV by He Jiankui have a major part in the book and in the ethics debate around germline editing in general.

Baylis outlines her opinions on how the process of regulation of human gene modification and the debate there of should proceed. In the book she advocates for slow science and having everyone at the table for the debates.

The book is written for an audience with only a little scientific background. Baylis explains the science important to the debate in a way that is clear and interesting to lay people and ethicists alike.

Chapter Overview

Baylis starts the book by explaining the science behind CRISPR and gene editing, and the history behind it. She follows this by writing about the direction that the research is heading, both in a foreseeable way, and speculatively. The middle of the book focuses current events and the ethical concerns that have been raised by them. She talks about the ethics of paid research participants and how it factors in to the ethics of gene therapy and ability to get informed consent. She finished the book writing about a possible process for debating about the future of genetic research as ethicists are calling for a (possibly temporary) moratorium on CRISPR research.

Prologue

A conversation about living forever begins the journey through the ethical implications of CRISPR. Baylis writes about the conversation, her experience trying a do it yourself CRISPR kit and "bio-hackers" doing self experimentation in the prologue of the book. She uses these topics to lead into an explanation of somatic editing (editing the non-reproductive cells of an organism) and germline editing ( editing the reproductive cells, eg. sperm or ovum, or cells early in embryonic development) . She discloses a bit about her background and her arguments for the future of gene editing in our species.

Targeting A Single Gene: Huntington's Disease

The chapter starts off with a hypothetical family from a work by Lisa Genova. The father of this family has Huntington's Disease which is a progressive disease that causes major impairment of movement, mental ability and mood. The hypothetical family was mirrored by a real family who had to deal with this devastating news. Huntington's is a dominant allele disease meaning if you even one copy of the faulty gene you will contract the disease. Since the disease doesn't usually exhibit symptoms until later in life, there is a high risk when a parent discovers they have it that their already born children may have the gene.

Baylis then gives a basic outline of the science behind the genetics of Huntington's and heritability. She outlines DNA and inheritance patterns for readers who may not be familiar. She notes that parents where one of the partners has 2 copies of the genes do not have any chance of having a child without the disease naturally. CRISPR could be used to remove the diseases eliminating the worry of passing it down to future generations.

From Editing a Genome to Altering Inheritance

This chapter starts off explaining the title of the book. Germline enhancement isn't just switching out genes in one person, it is redirecting human evolution, or to "alter inheritance" as Baylis states. She goes over some public opinion studies about the acceptance of CRISPR and other gene therapy options to cure diseases. She follows this with some of the issues with these types of surveys. She delves into the need for a "harm-benefit analysis" on the technique as there could be unknown consequences or mistakes in treatments. She mentions the case of Jesse Gelsigner and his death during a gene therapy trial as an example of unknown unknowns.

In this chapter she briefly touches on the costs of current gene therapies and who is going to foot the bill. She posits that the cost may be too high for governments to fund it and the incidences of the diseases too rare in a lot of cases for commercial viability. This leads to the argument of doing germline editing, once the process is done the disease ends in that family line. Methods exist now for all but the rarest cases to ensure parents can have healthy genetically related children. Prenatal screening and selective abortion allow parents to have children who do not inherit the disease. Baylis talks about arguments for and against these methods.

She finishes the chapter calling for democratic debate about the big questions of how we should proceed with CRISPR and other gene modification techniques.

Babies by Design

Baylis starts the chapter talking about the designer baby craze of the 1980's. The genius sperm bank, genetic testing to make sure children are disease free and dressing kids in all of the latest fashions was in style. She mentions the development of PGD, IVF and other fertilization techniques and what they meant for parents. She briefly covers genetic selection for savior siblings. Baylis then covers mitochondrial replacement therapy in detail and its recent history. The chapter then covers the events of the birth of Lulu and Nana (pseudonyms) in 2018 and the backlash from ethicists. She begins by explaining in depth what CRISPR via Cas9 is. She follows that by talking about opinion polls in the United States on gene therapy, and more specifically CRISPR treatments.

The chapter ends with some ideas of genetic enchantments that may be possible in the future .

From "Well" to "Better Than Well"

This chapter deals with modifications of the genome to not only eliminate diseases but increase human ability. The chapter starts by her friend asking her "Why wouldn't I want to be Usain Bolt". The question Baylis asks is should we enhance our athletic abilities or not. She also questions whether this would lead to people doing these enhancements because their neighbors are. She notes that the distinction between treatment and enhancement can sometimes be blurry both in definition and morally. She states that arguments can be made for any feature, such as height, to be considered either an enhancement or a detriment. Her argument is that trying to fit enhancement vs treatment into an ethical framework limits the conversation on broader ethical issues in society and around the technology.

She mentions that she worries we may be putting to much stock into genes and ignoring the effect the environment has. She also worries about unequal access to the technology because of income differences. Another worry is defunding of programs for people with disabilities as occurrences decrease and discrimination increasing as disabilities become more of a minority than they already are. The worry of creating a eugenic movement, either by accident or on purpose is discussed at the end of the chapter, along with a description of eugenics.

Ethics in the Interim

The chapter begins with the history of genetics in the 20th century. Baylis mentions the question some have asked; is our ethics conversation keeping up with our scientific progress. She believes it is at least in the sense that it's not impeding progress. The chapter continues with cloning and other treatments from the early 21st century and worries about them in popular culture. She then goes into details about the potential benefits to parents, society, the children and gene pool. She discusses things like reduced costs to parents and healthcare programs and less disadvantages for children. She then goes into the harms for the same groups as well as women in general.

The harms for women come with the side effects of IVF. There can be complications directly to the women themselves and emotional damage if the editing causes the loss of the baby. There is also a potential for peer pressure if the technology becomes more widely available. Harms to the parents could be new diseases being created by gene editing. There is also the potential harm of being labeled as inferior parents for not getting the treatment when it becomes a routine occurrence. The harms to the children are these unintended consequences according to Baylis, along with increased parental pressure to fit a mold imposed upon them. Society is potentially harmed by increase inequality between those who can afford it and those that can't. The chapter finishes by describing possible unintended harms to the gene pool.

Of Harms and Wrongs

This chapter deals with the potential ethical issues in genetic research. Egg providers can be treated in an exploitative way if care is not taken to do studies ethically. Baylis outlines a study using donor eggs where the subjects were paid at OSHU. The ethics board approvals were unclear whether the payment was for the eggs or for the inconvenience of the subjects. It was also not clear whether proper voluntary informed consent was acquired. There were also conflict of interest with scientists deciding which eggs to use for IVF treatment and which to use for research being the same researchers who would use them.

The access is a concern. Baylis considers the question of whether it okay that the technology is not equally obtainable. One argument is that access in the current healthcare system is in some cases limited to the wealthy. Why should gene treatment be different from this? This argument is about maintaining the status quo. The other argument is that all people should be treated equally and the status quo needs to change.

Another harm is increased discrimination as people with these disorders become rarer. Resources and programs for them will not be as accessible as they become more of a minority and public acceptance of them may decrease. As these groups become smaller and less visible advocacy on their behalf may decrease. Baylis also argues that there maybe insurance discrimination. There is also questions about what parties need to consent. Baylis and those she quotes wonder if the consent for the CRISPR treatment of Lulu and Nana was properly handled.

The chapter finishes which concerns about the ethics of embryonic research, the possible loss of human common heritage, and the ethics around "playing God" or messing with nature. Baylis quotes a few more public opinion studies to illustrate the room for ethical debate. She posits there may be counter productive elements to human enhancement as well. An arms race of favorable traits could happen leading to harm of the participants. She finishes by wondering if society could handle the changes that could come with gene-enhancements.

Slow Science

Baylis starts the chapter by explaining the slow science movement, which is a movement imploring scientists to take more time to think about the implications of their research. It is not a call to reduce progress but to more thoroughly analyse the ethics, reasons for and costs of that progress. Baylis posits that the goal of science should be the welfare of us and our descendants. She is concerned that well thought out science faces resistance from the profit driven "fast science" of our society. Fast science worries more about who owns and can profit off of ideas more than the good they can bring or potential harms.

Baylis mentions the process for medical treatments is usually very slow. The CRISPR technology progress more on the fast science path, going from creation to first human test in only a few years. In 2015 ethicists called for a moratorium but guidelines were developed instead that called for a slow down but not an outright stop. These guidelines called for a stop until safety concerns were worked out and until debate had happened in the broader society and a consensus was reached. The call for consensus was for all of society not only policy makers, scientists, and executives.

In 2017 another meeting of ethicists occurred and, at least in perception if not reality, loosened the restrictions on genome editing. Baylis notes that other ethicists not on the committee "widely interpreted this as having shifted the playing field". This lead to He to believing he could meet all of the requirements as it was not explicitly banned. She writes that there are some calls that ethics is impeding scientific progress and fast science advocates are frustrated with ethicists. She notes this attitude is also an ethical problem. He's research had ethical issues but fast science advocates blamed ethicists for not keeping up rather than the push to advance that may have opened the gates.

Baylis finished the chapter by mentioning the call of a global moratorium on genome editing from March 2019.

Scientists, Science Policy and Politics

The chapter starts with a declaration by Baylis that it is scientists responsibility to educate the public on science. She continues by presenting various arguments by other scientists and ethicists both for and against germline editing. One of the questions she asks in this chapter is about whether He and others viewed the lack of an explicit ban as permission to proceed. Baylis then outlines her version of Pielke's types of scientists; pure scientists, science analysts, issue advocates and science diplomats.

Baylis describes pure scientists as researchers who only goal is to broaden the knowledge pool of humanity. Science Analysts interpret and share the knowledge about advancements. They don't argue about the ethics or implications but work to educate the public and policy makers about scientific topics. The try to work in a neutral "if this is done, that will happen" framework. Issue advocate take a stance on an issue and fight for that stance.They more actively try to direct public discourse in the direction that they believe the science should proceed. Science Diplomats try to take a benefit cost style of analysis of policy suggestions. They work to inform policy makers of the implications of various policies and make suggestions which to abandon, which to change and which ones to bring up. In describing each of these roles she mentions their involvement in the human genome editing debate. She mentions the March 2019 call for a global moratorium on this practice.

She finishes the chapter by talking about the worries that temporary measures will lead to permanent bans and talks about who should make the rules. Her final point in the chapter is a worry that "...prominent members of the scientific community have moved prematurely away from the role of science diplomat to embrace more fully the role of issue advocate."

Ethicists, Science Policy, and Politics

Baylis starts off the chapter comparing the attitudes between students of the humanities vs students of the sciences. She mentions the divide between the two schools of thought and how some of scientists hold a disdain towards their counterparts and vice versa. She then outline the role of ethicists in policy making and science in the same way she did for scientists. Her roles are ethics theorist, ethics analyst, issue advocate and ethics architect.

Theorists worry about the structures of the arguments more than the right or wrong of them. They are concerned less about policy and more about ensuring that the arguments are clear and the different implications of them are understood. Ethics analysts are more involved with policy by teaching ethical principles to policy makers. They are not worried about the arguments as much as ensuring the process of decision making is properly followed. Issues advocates are much the same as their scientist counterparts: they choose a stance and work to forward it. Ethics architects work to ensure that everyone can be heard and groups who generally get sidelined in debate have a voice. As with their scientific analogs in the previous chapter Baylis discusses each roles place in the human genome editing debate.

She finishes the chapter mentioning a movement that she is an advocate which is Impact Ethics. She explains that this applies a rational framework for addressing issues in society in a fair way. This style of ethics is based on the principles of innovativeness, responsibility and accountability.

"All of Us" for "Us All"

This chapter starts with Baylis reflecting on an encounter with a fellow scientist. She mentions that if there is a lack of trust and transparency between scientists how can the public be expected to trust them. She then talks about calls for society wide activism and the criticism against that of people being too scientifically illiterate to understand the technology. Baylis questions whether this is the case and argues people who understand the science can still be against it. She highlights in great detail the importance of having broad societal engagement in science policy. She argues that in the long run changes to the human genome will effect everyone so no one should be left out of the debate. She mentions that while there has been many calls for input from the public, there has not been much effort put forth in developing methods to educate and interact with them.

She spends the rest of the chapter discussing methods for public engagement and the pros and cons of each.

Epilogue: A New Dawn

Baylis ends the books by looking at the challenges facing humanity. She touches on issues of climate change, overpopulation, and war. She ponders whether bio engineering could work to solve these problems. She takes a extremely urgent and very doom and gloom stance on the fate of the planet Earth. She ends the book with a call for broad societal debate on the issues, and an urgent call to action to fix them.

Reception

At the time of writing this article (November 2019) the only reviews to be found are the ones mentioned by the publishers on their website. Original sources for reviews when found are mentioned.

• Adam Hayden from Science writes “A vivid call to action… Timely and important… Commitments to justice, responsibility, accountability, and consensus-building are features of a socially just science and bioethics. Toward this end, Altered Inheritance is a foundational tool in the path ahead.”

• Chronicle herald writer Allison Lawlor writes “Baylis argues that everyone must have a role in determining our future as a species. Scientists who develop and use genome-editing tools shouldn’t be the only ones deciding on future uses of the technology.”

• Margaret Hamburg from the FDA writes “Insightful and forward-leaning. Françoise Baylis offers a wonderful framework to help us think about and act on bridging the divides between theory, science, politics, and practice. Her book Altered Inheritance will guide us toward more meaningful, sustainable solutions.”

• George Church, coauthor of Regenesis writes “Altered Inheritance is a call to action. Fair, balanced, and enjoyably readable, this book provides us with insights into the greatest technical and social challenges of our day and their ethical impact on future generations.”

• Josephine Johnston from the Hastings Center writes “Altered Inheritance argues that the use of gene-editing technology should require significant input from the broad public. This book is extremely timely, addresses a high interest and important topic, and comes from an influential voice in the gene-editing debate.”

• Peter Mills from the Nuffield Council on Bioethics writes “Informative and thoughtful, Altered Inheritance casts the ethically perplexing questions raised by genome editing in a clear new light. Françoise Baylis asks us to slow down and rediscover our collective moral agency instead of feeling overtaken by the momentum of science and technology.”

• Donna R. Walton from the Diva's with with Disabilities Project writes “Incisive and insightful, Altered Inheritance wrenches open the laboratory doors behind which science and technology struggle to set a new course for society, for humanity, and for those who are most vulnerable for extinction.”

• Author Carl Elliott writes “Françoise Baylis is a fearless philosopher whose courage is matched by her talent. In this wise, lucid book, she asks exactly the right questions. What kind of world do we want to live in and how likely is gene editing to take us there?”