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Loss of Possession: Concussions, Informed Consent, and Autonomy

Published online by Cambridge University Press:  01 January 2021

Richard Robeson  and
Nancy M. P. King
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Extract

The principle of informed consent is so firmly established in bioethics and biomedicine that the term was soon bowdlerized in common practice, such that engaging in the informed decision-making process with patients or research subjects is now often called “consenting” them. This evolution, from the original concept to the rather questionable coinage that makes consent a verb, reveals not only a loss of rhetorical precision but also a fundamental shift in the potential meaning, value, and implementation of the informed consent process. Too often, the sharing of information has been replaced by the mere acquisition of agreement with the authority ostensibly offering a choice.

Scholars of informed consent agree that its salience and its legitimacy derive from a fiduciary duty to inform, in order to respect, protect, and promote autonomous decision making by those to whom the duty is owed.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 42 , Issue 3 , Fall 2014 , pp. 334 - 343
Copyright
Copyright © American Society of Law, Medicine and Ethics 2014

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The suicides of a number of former NFL stars are especially significant in this regard. The 2006 death of former Philadelphia Eagles safety Andre Waters has been called a turning point in public perception about the relationship between concussions and football, and in perceptions about the integrity of the NFL.Philly.com website, “Rich Hofmann: Death of Ex-Eagle Andre Waters Sparked Concussion Awareness,” available at <http://www.philly.com/dailynews/sports/top_sports/20100211_Rich_Hofmann__Death_of_ex-Eagle_Andre_Waters_sparked_concussion_awareness.html>(last visited July 29, 2014). This was due in no small part to the efforts of Christopher Nowinski, a former Harvard football player and co-founder of the Sports Legacy Institute, available at <http://www.sportslegacy.org/>(last visited July 29, 2014, who obtained permission from Waters' family to have his brain studied for evidence of CTE. Waters' brain was determined to show the deterioration of “an Alzheimer's patient in his 80s.” Later suicides by other players clearly indicated that they believed in a connection between concussions and brain disease, with players taking their own lives in ways that would allow researchers to study their brains for CTE. Former Chicago Bear Dave Duerson is one such player, whose suspicions about CTE were confirmed. A. Scwarz, “Duerson's Brain Trauma Diagnosed,” New York Times, available at <http://www.nytimes.com/2011/05/03/sports/football/03duerson.html>(last visited July 29, 2014).(last visited July 29, 2014).' href=https://scholar.google.com/scholar?q=The+suicides+of+a+number+of+former+NFL+stars+are+especially+significant+in+this+regard.+The+2006+death+of+former+Philadelphia+Eagles+safety+Andre+Waters+has+been+called+a+turning+point+in+public+perception+about+the+relationship+between+concussions+and+football,+and+in+perceptions+about+the+integrity+of+the+NFL.Philly.com+website,+“Rich+Hofmann:+Death+of+Ex-Eagle+Andre+Waters+Sparked+Concussion+Awareness,”+available+at+(last+visited+July+29,+2014).+This+was+due+in+no+small+part+to+the+efforts+of+Christopher+Nowinski,+a+former+Harvard+football+player+and+co-founder+of+the+Sports+Legacy+Institute,+available+at+(last+visited+July+29,+2014,+who+obtained+permission+from+Waters'+family+to+have+his+brain+studied+for+evidence+of+CTE.+Waters'+brain+was+determined+to+show+the+deterioration+of+“an+Alzheimer's+patient+in+his+80s.”+Later+suicides+by+other+players+clearly+indicated+that+they+believed+in+a+connection+between+concussions+and+brain+disease,+with+players+taking+their+own+lives+in+ways+that+would+allow+researchers+to+study+their+brains+for+CTE.+Former+Chicago+Bear+Dave+Duerson+is+one+such+player,+whose+suspicions+about+CTE+were+confirmed.+A.+Scwarz,+“Duerson's+Brain+Trauma+Diagnosed,”+New+York+Times,+available+at+(last+visited+July+29,+2014).>Google Scholar
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According to NFL.com, the memo distributed by Commissioner Goodell to all 32 teams contains such provisions as disallowing a return to play or practice if the player demonstrates “an inability to remember assignments or plays, a gap in memory and persistent dizziness and headaches. The old standard, established in 2007, said a player shouldn't be allowed to return to the same game if he lost consciousness.” Associated Press, “Goodell Issues Memo Changing Return-to-Play Rules for Concussions,” available at <http://www.nfl.com/news/story/09000d5d814a9ecd/article/goodell-issues-memo-changing-returntoplay-rules-for-concussions>(last visited July 15, 2014). As low a threshold as the new standard might seem, its stark contrast with the 2007 standard confers legitimacy upon the complaints regarding the NFL's historical disregard for its players.(last visited July 15, 2014). As low a threshold as the new standard might seem, its stark contrast with the 2007 standard confers legitimacy upon the complaints regarding the NFL's historical disregard for its players.' href=https://scholar.google.com/scholar?q=According+to+NFL.com,+the+memo+distributed+by+Commissioner+Goodell+to+all+32+teams+contains+such+provisions+as+disallowing+a+return+to+play+or+practice+if+the+player+demonstrates+“an+inability+to+remember+assignments+or+plays,+a+gap+in+memory+and+persistent+dizziness+and+headaches.+The+old+standard,+established+in+2007,+said+a+player+shouldn't+be+allowed+to+return+to+the+same+game+if+he+lost+consciousness.”+Associated+Press,+“Goodell+Issues+Memo+Changing+Return-to-Play+Rules+for+Concussions,”+available+at+(last+visited+July+15,+2014).+As+low+a+threshold+as+the+new+standard+might+seem,+its+stark+contrast+with+the+2007+standard+confers+legitimacy+upon+the+complaints+regarding+the+NFL's+historical+disregard+for+its+players.>Google Scholar
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Examples abound. A number of highly publicized abuses in research, notably including the Tuskegee syphilis study (see Jones, J. H., Bad Blood: The Tuskegee Syphilis Experiment (New York: The Free Press, 1992), led to the enactment of the 1974 National Research Act (Public Law 93–348), which created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. In 1978, the Commission published “Ethical Principles and Guidelines for the Protection of Human Subjects of Research,” also known as the Belmont Report, available at <http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html>(last visited July 15, 2014). The Belmont Report provides the ethical foundation for federal human subjects research regulations, which were initially promulgated in 1979 and finally consolidated as the Common Rule in 1991. See <http://www.hhs.gov/ohrp/humansubjects/index.html>(last visited July 15, 2014). The pattern has been similar in the context of medical treatment, in particular with regard to end-of-life decision-making. See, e.g., In re Quinlan, 70 N.J. 10, 355 A.2d 647 (NJ 1976), which led to the development of ethics committees in hospitals nationwide.Google Scholar
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A very similar balance between safety and medical progress is fundamental to clinical research. See, e.g., Emanuel, E. Wendler, D. Grady, C., “What Makes Clinical Research Ethical?” JAMA 283, no. 20 (2000): 2701–2711.CrossRefGoogle Scholar
Brett Favre, for instance. See Breslow, J. M., “Brett Favre: ‘God Only Knows the Toll’ from NFL Concussions,” PBS, available at <http://www.pbs.org/wgbh/pages/frontline/sports/league-of-denial/brett-favre-god-only-knows-the-toll-from-nfl-concussions/>(last visited July 14, 2014).(last+visited+July+14,+2014).>Google Scholar
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Concussion studies involving high school players have been underway for more than a decade;Google Scholar
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This trend is most recently and thoroughly exemplified in a new report, Committee on Sports-Related Concussions in Youth, Institute of Medicine, National Research Council, Sports-Related Concussions in Youth: Improving the Science, Changing the Culture (Washington, D.C.: National Academies Press, 2013). The IOM Committee's conclusions and recommendations appear at 12 and 243–247. All of the Committee's recommendations reference a lack of reliable evidence and highlight the desirability of extensive further research: Coordinated national surveillance of and data collection about concussion incidence in youth ages 5–21;.Google Scholar
research into and development of evidence-based concussion management guidelines; large-scale controlled longitudinal studies, including development of a national brain tissue and biological sample repository, to assess the consequences of concussion; rigorous evaluation of the effectiveness of risk-reducing changes in play and practice; research into biomechanical determinants of injury risk, including safety equipment and impact-monitoring systems; and mounting and evaluating of large-scale evidence-based educational interventions to change the culture surrounding concussions.Google Scholar
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It should be obvious that all such potential criteria have uncertain connections to injury prevention data, at least at present. The question should not be whether empirical data alone are sufficient to change policy, nor should it be whether players and parents can be trusted to say no to youth football. A deeper inquiry is called for to arrive at institutional reforms that can be both meaningful and successful.Google Scholar
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See supra note 6.Google Scholar