On October 18, 2017, Dr. Kevin FitzGerald delivered a lecture at the LMU campus on genomic medicine and its ethical implications within healthcare settings. Genomic medicine is a field of medicine that uses genomic information to better address medical needs (assess medical risks, make a diagnosis, etc.). Advances in genomic technology have raised many questions regarding what constitutes a “healthy” individual. To explore this concept, we asked a bioethicist, a clinical ethicist, and a sociologist to share their views. Here are their responses…

Who is healthy?

Who is not?        

Who decides?

With advances in genomic medicine and genetic engineering, the concept of “good health” has shifted.  What, in your opinion constitutes a ‘healthy’ individual? A ‘healthy’ population? How does the likelihood of developing a certain disease, and/or the ability to genetically eliminate this likelihood, influence your answer? 
Q:
A:
"The shift from a symptomatic to a genetic paradigm of medicine raises a host of ethical questions. The case of genetic testing is exemplary: most medical tests are designed to diagnose actual symptoms; genetic tests, in turn, can predict potential diseases, thus triggering new issues that touch upon respect for personal autonomy, the demands of non-maleficence, and the challenges of social beneficence. 
 

Still, central to the shift of paradigms in question is a deeper puzzlement of a meta-ethical nature: it concerns the definition of “health” and “disease,” now made equivocal by the fact that predisposition to a disease may coexist with the lack of symptoms associated with illness. 

On the face of it, such an apparent contradiction seems to pose an intractable problem.  In reality, it throws into relief, once more, the need to distinguish scientific explanation of disease and phenomenological understanding of illness. Of course, genetics deepens the explanatory power of medicine, relative to the etiology of disease as objective entity, but it leaves intact our understanding of illness as subjective appropriation of the latter. 

Such appropriation remains contingent upon an attribution of meaning, ultimately socially defined, in which “being healthy” represents a condition of personal integration, irreducible to functional definitions.  To “be healthy” is to “be whole,” but to be whole is to be able to function in a web of relativities that makes disease, including the one defined by a genetic predisposition, livable, rather than paralyzing.  

Genetic medicine challenges society to rethink the holistic character of health, and to pay renewed attention to the conditions that make possible both the personal integration of illness, and the communal responses to the demands of solidarity such integration entails."

 
                                             -Dr. Roberto Dell'Oro

Roberto Dell'Oro is the director of the Bioethics Institute and professor in the Department of Theological Studies at Loyola Marymount University. Dr. Dell'Oro teaches in the areas of bioethics, fundamental moral theology, and ethical theories, with special interest in anthropological themes at the crossroads of theology and philosophy. 

A:

Dr. Joseph Raho is a clinical ethicist at the UCLA Health System Ethics Center in Los Angeles. He is also a member of three ethics committees at the hospital and lectures regularly for the "core ethics curriculum" at UCLA. 

"Throughout history, our understanding of what it means to be “healthy” has shifted (see Badash et al.2017, pp. 1-4). The contemporary concept of health is fraught with different interpretations. Should the concept relate exclusively to an individual’s physical and mental well-being or, alternatively, should it also include the social, environmental, and economic dimensions of health? With recent advances in genomic medicine and genetic engineering, our understanding of health may be shifting yet again.

 

In my opinion, an individual can be considered “healthy” to the extent that he or she is able to live a life that is generally free of impairment, whether physical or mental. Our health is experienced subjectively as a state of equilibrium that goes unnoticed until we become unwell (Gadamer 1996). Our health is connected intimately with our well-being and quality of life. We usually enlist the assistance of a physician when we become unable to cope with the disruption that is caused by illness. We seek to be comforted, healed, and made whole again. It is this disruption to one’s self that renders one unwell or unhealthy. That a person has a propensity toward a particular disease would not in itself render him or her unhealthy (unless, of course, the prospect engendered such stress or anxiety for the individual that it rose to the level of mental disturbance).

 

As a clinical ethicist, I generally encounter persons who have complex acute medical (or surgical) needs. In many instances, the patient is too ill to make decisions for herself and so it will be the patient’s family who must decide about how aggressive medical or surgical intervention should be. These are life-altering decisions. The question we must always ask ourselves is the following: What is the likelihood, given the patient’s diagnosis and prognosis, that he or she will return to some level of health, even seriously compromised health? Will medical or surgical intervention allow the patient to achieve important goals; maintain social interaction with family and friends; remain free of pain and other symptoms? Or, alternatively, will such intervention merely forestall an inevitable decline or perpetuate a state of chronic poor health?"

                                   

                                                                                                                                        -Dr. Joseph Raho

References:

 

Badash, Kleinman, Barr et al., “Redefining Health: The Evolution of Health Ideas from Antiquity to the Era of Value-Based Care,” Cureus(2017) 9(2): e1018.

 

Gadamer, The Enigma of Health: The Art of Healing in a Scientific Age(Stanford, Stanford University Press: 1996).

Dr. Rachel Washburn is a Professor of Sociology at Loyola Marymount University. She works specifically in medical sociology and is currently researching debates about the human health harms of pesticide exposure in the US. 

A:

"The definition of “good health” is constantly undergoing modification as a result of a variety of factors, ranging from findings of scientific research to shifts in cultural ideals and the economy. Today, our understanding of “good health” is largely shaped by the notion of risk. Over the last several decades, biomedical research has been increasingly oriented around searching for earlier and earlier indicators of potential disease and/or disorder. In this context, “good health” no longer means being free of the visible or felt signs of disease, but rather having a low risk profile. A “healthy” individual is one whose lifestyle conforms to current medical and public health guidance and who is free of other risk factors. This definition holds for populations as well, given that risk factors are usually first identified at the population level. Developments in genomic medicine do not play a major role in my answer. They merely contribute to the elaboration of risk."
                                  -Dr. Rachel Washburn
CONTACT

To learn more about the LMU Bioethics Institute click below.  

LMU Bioethics Institute

Loyola Marymount University Suite 4500

1 LMU Drive

Los Angeles, CA 90045

lmu.edu/bioethics

Tel: 310-258-5417

If you have a bioethics-related event or opportunity you would like featured in our calendar, contact the Bioethics Institute Graduate Assistant, at BioethicsGA@lmu.edu, with relevant information.

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