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Resolved: Public health services should expand access to gene editing technologies (Introduction)

Resolved: Public health services should expand access to gene editing technologies (Introduction)

[Bibliography, PPT, Gene Editing Topic Vocabulary]

Introduction

The Fall 2018 Public Forum debate topic for NSDA China is, Resolved: Public health services should expand access to gene editing technologies.

In this essay we break-down and discuss they key terms, essential background information, and introduce Pro and Con arguments.

As will discussed throughout the essay, there are two key issues on this topic — are gene editing technologies desirable and should they be accessible through public health services? Different Pro and Con teams will emphasize different aspects of that debate.

Resolution Terms

There are three key terms in the resolution and we will discuss them in the order that will help you best understand the meaning of all three

Gene Editing Technologies

In order to understand what gene editing technologies are it is important to understand what genes are (or to recall, if you already know).

(Genes are) the biological templates the body uses to make the structural proteins and enzymes needed to build and maintain tissues and organs. They are made up of strands of genetic code, denoted by the letters G, C, T and A. Humans have about 20,000 genes bundled into 23 pairs of chromosomes all coiled up in the nucleus of nearly every cell in the body. Only about 1.5% of our genetic code, or genome, is made up of genes. Another 10% regulates them, ensuring that genes turn on and off in the right cells at the right time, for example. The rest of our DNA is apparently useless. “The majority of our genome does nothing,” says Gerton Lunter, a geneticist at the University of Oxford. “It’s simply evolutionary detritus.” What are all those Gs, Cs, Ts and As? The letters of the genetic code refer to the molecules guanine (G), cytosine (C), thymine (T) and adenine (A). In DNA, these molecules pair up: G with C and T with  [The Guardian]

Photo Credit: Socratic https://socratic.org/questions/56116c7e11ef6b17032ddc8b

Genetic diseases result when there is an inappropriate mutation in a cell. Gene editing allows the gene that underlies the mutation to be edited — changed or replaced –t0 eliminate the problematic mutation.

Patronus Medical, http://blog.patronusmedical.com/the-benefits-of-gene-editing The Benefits of Gene Editing

In many cases, genetic diseases occur when a mutation appears inside a cell. Although researchers have been able to identify which cells the mutations occurred in, little could have been done to repair the defective genes. Gene editing allows doctors to use specialized molecular tools to remove, repair or replace damaged genes with a healthy copy. Although the technology is still a bit far off from being used regularly by medical professionals worldwide, animal trials have been successful. In fact, a team of Chinese scientists will be the first to test gene-edited cells in human patients this month. CRIPSR, or “clustered regularly interspaced short palindromic repeats,” is the most advanced and effective gene-editing technique being utilized by scientists. CRISPR is inexpensive, easy to use and precise. Gene modifications using CRISPR have extended from corn and rice to mice and pigs…..While scientists have long been able to find defective genes, fixing them has been so cumbersome that it’s slowed development of genetic therapies. With gene editing, scientists home in on a piece of DNA and use molecular tools that act as scissors to snip that spot – deleting a defective gene, repairing it or replacing it. There are some older methods but a new tool called CRISPR-Cas9 has been adopted by laboratories worldwide because it’s faster, cheaper, simple enough to use with minimal training, and allows altering of multiple genes simultaneously.

Ordinarily, if a doctor was to edit a gene, the gene would only be altered in the body of the individual who possessed the gene. If, however, the doctor edits a gene that is part of the human genome — part of sperm, eggs, or embryos, which is known as the germline — then those genetic changes are inherited — passed on from one generation to the next.

Keren Weintraub, National Georgraphic, December, 2015, https://news.nationalgeographic.com/2015/12/151203-gene-editing-terrific-terrifying-science/ 5 Reasons Gene Editing Is Both Terrific and Terrifying

This week, a high-profile group of researchers, ethicists and advocates convened in Washington, D.C., to discuss the ethics of editing human genes. In particular, they’re concerned about changes to human eggs, sperm or embryos—known as the human germline. In particular, they’re concerned about changes to human eggs, sperm or embryos—known as the human germline.If you edit the genes of an adult, the changes don’t get passed down to that person’s children. But editing genes in the germline would affect the child’s own egg and sperm, so the genetic changes are inherited.

Gene editing that impacts future generations presents a unique set of advantages and disadvantages that will be discussed later in the essay.

Currently, gene editing is very experimental, but it has been done on a limited scale and China has established leadership in the area.

Keren Weintraub, National Georgraphic, December, 2015, https://news.nationalgeographic.com/2015/12/151203-gene-editing-terrific-terrifying-science/ 5 Reasons Gene Editing Is Both Terrific and Terrifying

THE IDEA OF tinkering with the genes we pass to our children has long been the stuff of science fiction. But scientists are rapidly solving the technological challenges, and expect such gene editing will soon be feasible. A three-year-old technique called CRISPR/Cas9 is so effective at cutting and adding genes that researchers all over the world have adopted it in their labs. Earlier this year, researchers in China edited genes in a nonviable human embryo to try to treat an inherited blood disease, and ended up with a lot of unintended—and potentially dangerous—changes.

Public Health Services

The term “public health services” needs a bit more unpacking than initially meets the eye because definitions will impact debates on the issue.

Most basically, most scholars agree that “public health services” are provided by the government.

Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine and director of the Institute for Bioethics, Health Policy and Law at the University of Louisville, 2002 [“Public Health Law, Society, And Ethics: Rethinking the Meaning of Public Health,” Journal of Law, Medicine & Ethics (30 J.L. Med. & Ethics 144), Summer, Available Online via Lexis-Nexis n9 Committee for the Study of the Future of Public Health, Institute of Medicine, The Future of Public Health (Washington, D.C.: National Academy Press, 1988): at 19.

The IOM (Institute of Medicine) report also makes public health the responsibility of everyone, although it gives primacy to government efforts: “The mission of public health is addressed by private organizations and individuals as well as by public agencies. But the governmental public health agency has a unique function: to see to it that vital elements are in place and that the mission is adequately addressed.”  In contrast to this government-centered approach, a more expansive definition of public health cited in, but not necessarily endorsed by the IOM report is the following: “It’s anything that affects the health of the community on a mass basis.”  Under such a view, efforts to improve access to health care as well as more general measures to prevent injury and illness and reduce morbidity and mortality, such as advice to use sunscreen and eat healthy foods, would be considered public health. I term this conception of public health the “population health as public health” model.

Note that the definition does not say that only the government can provide public heath services,but it does say that the government is primarily responsible for providing such services. Regardless of the debated extent of the private sector’s role, the government clearly provides important services when public health services are discussed.

Pro teams are likely to argue that government action to provide access to gene editing technologies will make the technologies more accessible to to those who otherwise may not be able to afford them, though it is obviously the case that not all public health care is free.

Second, as suggested in this definition, “public health” evidences an overall concern with “population health.” Protecting the overall health of the population, perhaps through a reduction in disease, becomes an important justification for the services being provided by the public sector and not just the private sector.  A similar piece of evidence —

Dorothy Puzio, health care attorney 2003/4, Journal of Law & Health, An Overview of Public Health in the New Millennium: Individual Liberty vs. Public Safety, http://engagedscholarship.csuohio.edu/jlh/vol18/iss2/3/, DOA: 8-20-15, p. 175-6

Public health differs from traditional health care in several respects. Some of its distinguishing features include a focus on: “(1) the health and safety of populations rather than . . . individual patients; (2) [the] prevention of injury and disease rather than treatment[;] . . . (3) [the] relationship between government and the community rather than physician and patient; and (4) services grounded on [sic] . . . scientific methodologies of public health (e.g. . . . epidemiology) rather than personal medical services.” The Institute of Medicine’s definition of public health, set forth at the beginning of this article, reinforces these distinguishing characteristics by emphasizing a mutuality of obligation lying with the government and community as a whole, and focusing on increasing the incidence of conditions that facilitate healthy living as opposed to guaranteeing health itself. People often fail to appreciate the benefits of public health, because the effects of prevention are usually invisible. However, a strong public health system is essential to the welfare of any society, and has accounted for approximately “twenty-five of the thirty years of increased life expectancy in the United States since the turn of the century.” The importance of public health to American society has been underscored by the events of September 11th, which confirmed that terrorist attacks, with the potential for biological warfare, are very real threats.

Third, definitions of “public health” also raise questions of whether or not the public health services can be mandatory.

Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine and Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville, 2002 [[“Public Health Law, Society, And Ethics: Rethinking the Meaning of Public Health,” Journal of Law, Medicine & Ethics (30 J.L. Med. & Ethics 144), Summer, Available Online via Lexis-Nexis]

The third conception of public health, and the one I advocate, is more limited in scope. “Government intervention as public health” involves public officials taking appropriate measures pursuant to specific legal authority, after balancing private rights and public interests, to protect the health of the public. These measures may be coercive. The existence of a public threat demands a public response, and in a representative political system it is the government that is authorized to act on behalf of the public.

As will be discussed in more detail later, it is not difficult to see the application of this argument in this context — If government authorities come to see gene editing as a solution to disease, perhaps they will require gene editing, threatening, at the very least, freedom.

Access

The term “access” in the resolution is potentially more significant than it first appears.

According to Dictionary.com, “access” means…

“the ability, right, or permission to approach, enter, speak with, or use; admittance.”

In this context, it simply means the that the government simply ensures that people have access to the gene editing technologies. Significantly, the resolution does not require that public health services fund all or nearly all the costs of such services. Pro tams are likely to argue, at the very least, that provision of such pubic health services makes them accessible to the poor, and arguably even makes them affordable (if “public health services” definitionaly means the government will pay for them, or at least subsidize the costs).

A strong Pro twist on the topic will be that gene modification is inevitable and that access through public health services ensures that members of all classes are able to afford the technologies and take advantage of them.

A strong Con twist will be that greater access facilitates greater development of technologies they will argue are bad and wealthier people will inevitably enjoy greater access through private sector medicine

Benefits of Gene Editing Technologies

Each of these arguments will be unpacked in more detail in future essays, but we will summarize them here.

Genetic diseases.  Some diseases are caused by genetics and editing genes will allow individuals who end up with these diseases due to genetics to avoid them. At the very least, these individuals no longer be susceptible to the diseases and if the alternations are made in the germline then the susceptibility of future generations to these diseases will be reduced. Sickle cell and cancer prevention are common examples of this.

Reduced bacterial infections. Some companies have developed new viruses through gene editing that attack harmful bacteria. Bacterial infections can often be life threatening.

Answering Objections to Gene Editing

There are a number of common objections to gene editing.  Each of these will be discussed in more detail in future essays, but we will briefly address each of them here.

Mutations. Gene editing could result in unintended mutations, but gene mutations are common in nature, are generally harmless, and have been demonstrated to be harmless in monkeys when gene editing was used.

It’s not natural. Gene editing is not “natural” (assuming that human intervention is not ‘natural’), but nature has dealt us an unhappy blow by passing down a number of very unhealthy (to say the least) genes.  This also provides a good answer to any, “it’s too risky/dangerous” arguments — the status quo causes a lot of health problems.

Future generations. Some argue that we should not make decisions for future generations. First, only Pro teams who are arguing for alterations to the germline need to answer this. Second, in deciding not to use gene editing we are making a decision for future generations (including a decision to leave them with problematic genes).

Designer babies.  The “designer babies” objection is based on the argument that people will use gene editing not (only) for health purposes but to produce better looking, “perfect” babies. Beyond debates about the merits of this, it is a distant prospect that requires manipulating thousands of genes.

Objections to Gene Editing

Most of the he objections to gene editing have been briefly discussed in the previous section. In future essays we will discuss how to answer these arguments from the Con’s perspective. In this section, however, we will discuss a couple of other objections.

Discrimination.  A spin-off of the designer babies argument, this objection argues that we will only end up with designer babies and that others who don’t fit the societal mold of beauty will be discriminated against.  There are also eugenic risks.

Marcy Darnovsky, August 2016, Dranovsky is executive director of the Center for Genetics and Society, https://www.nationalgeographic.com/magazine/2016/08/human-gene-editing-pro-con-opinions/ Con: Do Not Open the Door to Editing Genes in Future Humans

In opening the door to one kind of germline modification, we are likely opening it to all kinds. Permitting human germline gene editing for any reason would likely lead to its escape from regulatory limits, to its adoption for enhancement purposes, and to the emergence of a market-based eugenics that would exacerbate already existing discrimination, inequality, and conflict. We need not and should not risk these outcomes.

Health problems. Just ask doctors make errors in surgery, they could “cut” the wrong gene –

Associated Press, December 1, 2015, http://www.foxnews.com/health/2015/12/01/potential-benefits-and-ethical-implications-gene-editing.html   The potential benefits and ethical implications of gene editing

Safety is a key question because gene editing isn’t always precise enough; there’s the possibility of accidentally cutting DNA that’s similar to the real target.

Costs. Providence public health access to gene editing technologies could be incredibly expensive, potentially resulting in increased taxes and/or deficit spending. It could also result in increased medical costs that push the price of health care above what most people can afford, creating health care trade-offs.  And even if the Pro claims they can make gene editing services free, they cannot make other services free, and if the costs of those rise, access to health care will fall.

Objections to Public Health Services

Independent of the question of whether or not gene editing technologies are good, some Con teams may argue that they should not be provided through public health services for a couple of reasons.

Libertarian objections. Public health services are funded through taxation, and the collection of taxes is inconsistent with libertarianism, an argument that was popular on the Universal Basic Income (UBI) topic.

Freedom. As discussed in the definitions section, public health services often turn coercive (even if they were not originally intended to be so).

Bad to solve inequality through public health.  Some scholars argue that it is bad to solve inequality through public health approaches because it simply results in the medicalization of inequality and actually distracts from efforts to deal with these structural issues.

Ilan H. Meyer, Deputy Chair for Master of Public Health Programs and Associate Professor of Clinical Sociomedical Sciences at Columbia University’s Joseph L. Mailman School of Public Health, and Sharon B. Schwartz, Associate Professor of Clinical Epidemiology at Columbia University’s Joseph L. Mailman School of Public Health, 2000 [“Social Issues As Public Health: Promise And Peril,” American Journal of Public Health, Volume 90, Issue 8, August, Available Online to Subscribing Institutions via Academic Search Elite, p. 1189]

Along with the promise of this approach, however, is considerable peril that deserves discussion. We are concerned that the study of social and economic factors in public health may have unintended consequences that, paradoxically, serve to preserve disparities rather than eliminate them.10 This can occur because public health research transports social issues into the health domain, where they are examined through the narrow prism of health relevance instead of within their political, social, and economic contexts. We refer to this as the “public healthification” of social problems, akin to the “medicalization” and “healthism” that have.

Accelerated development.  Support for gene editing technologies by public (government) medicine could accelerate their development but still leave the costs out of reach for ordinary citizens, especially when wealthy citizens can access the best technologies through the private sector. Accelerating development might only service to widen inequality.

The Environment and Species Extinction

There is an interesting debate in the literature on gene modification as to whether or not gene modification can be used to prevent species extinction and to bring extinct species back to life.

While this appears to have little to do with a topic centered around “public health services,” there are broader definitions of “public health” that include environmental protection –

Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine and director of the Institute for Bioethics, Health Policy and Law at the University of Louisville, 2002 [“Public Health Law, Society, And Ethics: Rethinking the Meaning of Public Health,” Journal of Law, Medicine & Ethics (30 J.L. Med. & Ethics 144), Summer, Available Online via Lexis-Nexi]

The “human rights as public health” definition has been applied both internationally and domestically. According to Morris Schaefer: “The health of most people in the world depends less on access to medical services than on efficient farming, distributive justice, ensuring ‘domestic tranquility,’ and broad-based, sustainable development of natural and built environments.”

For now, I’ll leave it to you to discuss whether or not genetic modification of non-human animals fits within this resolution.

Framework

We always reserve framework questions for last because it is important that frameworks support the values advanced in the contentions.  We will have a greater discussion of framework in later essays, but suggestions for consideration include —

The role of the government is to protect the health of the population (Pro)
The government should not be in the business of provide health care, reallocation of tax dollars if a violation of freedom (Con)