REGULATING GENETIC ADVANTAGE.

Author:Polcz, Sarah
 
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TABLE OF CONTENTS I. INTRODUCTION 266 II. BACKGROUND 268 A. Choosing Our Genetics 268 B. Genetic Modification for Performance Enhancement in Sports 271 C. WADA's Ban on Genetic Modification for Performance Enhancement in Sports 273 III. EXPERIMENTAL STUDIES 280 A. Methodology of Study One 280 B. Results of Study One 282 1. Reactions to the Base Case Scenario 282 2. Comparison to Attitudes Towards Doping 283 C. Methodology for Study Two 283 D. Results of Study Two 285 1. Challenging the Idea That the Genetics One is Born with Should Confer Protected Privilege 285 2. Effect of Language in Attitudes to Performance Enhancement in Sports 286 3. Robustness of Our Results to Concerns of Equality of Access and to Modification Type 286 IV. DISCUSSION 286 A. Support for Gene Doping 287 B. Genetics at Birth Are Not Deserving of Competitive Protection 287 C. Choice of Language Impacts Public Perception 289 D. Inequity of Access Not a Concern 290 E. The Self-Authoring Vision of the Spirit of Sport 290 F. Limitations and Future Directions 291 V. CONCLUSION 292 APPENDIX I 295 I. INTRODUCTION

Some things in life we have no control over; they are the result of luck. The genetic lottery has traditionally been the quintessential example of a realm where luck reigns. But our awareness of the inner workings of biological fortune and misfortune is accelerating. Scientists are uncovering new links between genes and attributes, illuminating how our genetics shape our lives. (1) But what if it were possible to change our genetics even in adulthood? Long a staple of science fiction plots, this alteration has recently become possible through a new wave of gene-editing techniques, particularly CRISPR. (2) Applications of the technology are developing rapidly. (3) The genetic modification of adults, particularly for reasons other than medical treatment, poses novel questions for contemporary society. (4) These questions stand apart from concerns about designer babies, even though the latter are attention-grabbing. (5) These adult enhancement applications have disruptive potential in both public and private domains such as: education, the job market, the marriage market, combat, disability rights, criminal justice, and the sports and entertainment industry.

The one domain with regulation already in place, as it foresees an early influx of adults who choose genetic modification, is sports. In 2003, the international oversight authority on the use of drugs in international sports events, the World Anti-Doping Agency ("WADA") preemptively banned athletes who have undergone genetic modification, branding such procedures as "gene doping." (6) WADA's motivation for the ban is the protection of natural talent, which it equates with ensuring a level playing field. (7) WADA's response to the perceived threat of adult genetic modification not only imposes prohibitions but also sets an agenda of moral education to shape public attitudes. WADA's rush to regulate genetic modification has ramifications from a broader societal perspective: with new technologies, decisions by early, influential movers can cause ripple effects in other domains. (8)

In contrast to WADA's top-down approach, the scientific community is actively encouraging urgent and widespread public engagement around the uses of these new technologies. (9) Scientists' motivations include promoting transparency, conferring legitimacy, and improving policy making, (10) all of which may mitigate the risk of a public backlash that could otherwise set back their agenda of advancing these technologies to alleviate human suffering. WADA, on the other hand, does not have the same motivations to ensure a robust public dialogue since the benefits of the technology fall outside of WADA's domain.

An empirical approach allows us to investigate what concerns weigh heavily with the public. Part of the challenge of public engagement is that the scientific community often structures its discussions around specific scientific techniques, which in important instances do not map to socially meaningful distinctions and values that an innovation may challenge. (11) Confronting this shortfall, in this paper we investigate public attitudes toward one socially meaningful application of genetic modification technology which we expect will be practiced early and often. Specifically, we consider when the genetic "have-nots" acquire advantageous genes that already exist within the human population but which are naturally possessed by only a select few. (12)

Our study is the first to investigate public preferences for the regulation of genetic enhancement in sports. We find that whereas the public sees drug doping as rightfully prohibited, they do not see genetic modification for performance enhancement in the same way. With the unlevel playing field of inherited genetic advantage laid bare, people do not support protecting natural talent. It becomes clear this protection amounts instead to the defense of at-birth genetic advantages.

In Part II, we provide context on genetic modification, why sports were the first area to be regulated, the reasoning behind the ban, and the broader context of perceptions of fair outcomes. This sets the scene for our own experiments probing perceptions of fairness concerning gene doping, which we introduce in Part III. Part IV contains our Discussion and Part V our Conclusions.

  1. BACKGROUND

    1. Choosing Our Genetics

      Throughout human history the only deliberate impact a parent could have on the genes of their offspring has been through their choice of mate. But opportunities to expand genetic choice are already arising. Parents using donated sperm or eggs are now able to select donors based directly on their genetics. (13) It has become a routine part of an in-vitro fertilization ("iVF") cycle to genetically screen embryos before they are transferred to the womb. (14) There are currently no legal barriers in the united States to choosing an embryo to implant based on genetic testing. (15) While today genetic screening is typically performed only for a handful of conditions, the technology is already mature enough to screen for almost any genetic variant. (16) In The End of Sex, Hank Greely argues that in twenty to forty years, parents in developed countries will regularly use genetic testing in combination with embryo selection in order to maximize the chances their children will have the traits the parents desire. (17)

      Beyond the ability to select an embryo comes the much more recently-developed ability to modify genetics. This can be done at the embryo stage or later. Modification of human embryos is an example of a germline modification, i.e. a change which enters the gene pool because it can be passed onto offspring. Adults can also be genetically modified; however, provided that such modifications do not encompass changes to their eggs or sperm, these modifications cannot be inherited. These changes are referred to as somatic modifications. The early promise of somatic genetic modification is the individualized treatment of genetically-caused diseases. Clinical research on such treatments started in the 1980s, and the first gene therapy was approved in China in 2003. (18) To date there have been nearly 2600 gene-therapy clinical trials. (19)

      In the last five years, the genetic engineering field has been revolutionized by the new technology CRISPR. First demonstrated as a genome-editing technology in human cells in 2013, (20) this technology enables precise genetic changes to be made at nearly any location on a DNA molecule, by making molecular-level scissor-like snips. CRISPR is widely regarded as revolutionary in part because it is cheaper, more accurate, and simpler than earlier technologies. (21)

      Clinical trials for somatic applications using CRISPR have already started. (22) On the germline side, a team of Chinese researchers announced the first successful editing of a human embryo in 2015, (23) and in 2017 U.S. researchers repeated the feat. (24) These advances ignited a heated debate over the appropriate ethical and regulatory framework for such research. (25) The American College of Medical Genetics made an official statement in January 2017 advising that the "potential for rapid advance of this approach, and the pressure to apply it clinically, should not be underestimated." (26) On November 26, 2018, a Chinese researcher reported the birth of two children he had modified as embryos using CRISPR. (27) While to date, germline applications ("designer babies") have been at the center of this debate as they stand to introduce changes to the human gene pool, (28) there has been acknowledgement that policy attention should also be directed towards uses of genome modification technology to enhance the genetics of adults. For example, stakeholders--including the National Academies of Sciences and Medicine--have recently made urgent calls for public engagement to inform the policy-making process for human genome modification, particularly for enhancement applications. (29)

      These calls for public engagement are made against a background of a near total absence of studies that solicit public input. A 2015 review of human enhancement public opinion surveys concluded that the area is understudied. (30) Since then, there have been two public opinion surveys of note. The first, commissioned by Pew Research Center, found that 42% of participants were supportive of gene editing to reduce babies' chances of disease if the babies would be far healthier than any known human, 52% were supportive if the babies would be much healthier than the average human today, and 54% were supportive if the babies were equally healthy as the average human today. (31) The National Academies of Sciences and Medicine, in their congressionally commissioned report on this topic, referenced this work: "the Pew study and many others suggest that policy in this area needs to be developed with full...

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