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Genetic Ethics
DNA Tests, Our Identity Exposed
What is DNA?
Deoxyribonucleic acid (DNA) is a fundamental building block of living organisms. DNA contains hereditary information that is present in almost every cell of an organism. By combining four chemical bases, adenine (A), guanine (G), cytosine (C), and thymine (T), nucleotides are arranged in a double helix spiral formation. This resulting sequence is a unique blueprint which provides information for maintaining the organism.
Humans' DNA consists of 6 million base pairs of ATCG, which are stored in 23 pairs of chromosomes. While 99% of this genetic information is shared among all humans, the remaining 1% is distinct to each individual and accounts for their ancestry.
The Science Behind DNA Testing:
How accurate are DNA tests?
Genetic Lineage
Half of your DNA comes from each parent. Your inherited DNA is not entirely identically to your parents because as the DNA is transmitted it shuffles around in a process called recombination. Without recombination, you would be 1/32nd of each of your ancestors from 5 generations ago. However, with recombination you may have a significantly higher proportion of genetic similarity to an ancestor from 5 generations ago, or you may share zero ancestral similarity. Due to recombination, two siblings results may differ significantly. One DNA test result may come back stating that a sibling is 10% Italian, while the other sibling’s results may say 0% Italian. One sibling is not more Italian than the other, it is simply that the Italian ancestors are more represented in one sibling's DNA over the other's.
How do companies like 23andMe and Ancestry determine a person's genetic ancestry?
Companies that offer ancestry DNA tests do not actually trace your ancestral lineage. There is little access to the genomes of deceased family members from previous generations, hence, your DNA is not matched and compared to your preceding ancestry. Instead, DNA tests look for genetic markers that are prevalent in certain areas. If your DNA test comes back saying you have French lineage, this indicates that you share some genetic similarity to people currently living in France. The assumption is that you then share genetic markers with the ancestors of that area. Ancestry testing is inaccurate because it relies on the database of samples held by testing companies. Other inaccuracies stem from the fact that minorities are underrepresented in these databases. Furthermore, identical twins have received differing results, and individuals who have taken genetic tests from different companies have also received varied results.
Your Privacy at Risk
There are ways in which genetic testing can offer benefits. For instance, genetic mutations can be identified, giving individuals insight regarding how to approach their health. However, this may reveal sensitive information about other family members. Further, a genetic test that identifies an inherited condition cannot predict whether symptoms of the disorder will manifest, or how severe the symptoms may be. Knowledge of one’s potential genetically determine disorder may contribute to greater harmful than solely the symptoms of the disease. Whether knowing or not knowing is better can vary by individual and does not pose a grave ethical dilemma. On the other hand, the genetic data that companies gather, and their distribution of this data challenges our privacy and the principles of autonomy and justice that go along with it.
Joseph James DeAngelo Jr. listens to victim impact statements at the Gordon D. Schaber Sacramento County Courthouse. (Santiago Mejia / San Francisco Chronicle)
RESOURCES
MedlinePlus: Understanding Genetics
MedlinePlus: Genetic Testing Questions
The Privacy Problem of Direct-to-Consumer Genetic Testing
National Human Genome Research Institute: Genetic Discrimination
The Privacy Problem of Direct-to-Consumer Genetic Testing
Verge Science: The at-home DNA test craze is putting us all at risk (Youtube)
Given that our DNA contains information accounting for our various predispositions, behaviors, and health, our genome is a matter of personal privacy. The bioethical principles of autonomy and justice are directly related to the implications of our genetic data being available to individuals other than ourselves. Given that efficiency and profit are fundamental goals of our free market society, deciding who to hire based on their DNA can be an advantageous tool for corporations. Furthermore, offering individuals differing insurance coverage options based on their predispositions to certain diseases may be more cost-effective. This genetic discrimination infringes on autonomy and justice because it does not ensure equal opportunity and will eventually lead to a situation in which individuals with “less desirable” genetic traits, will not only face greater difficulty finding work and health coverage, but will also be explicitly subjugating their successors to this same injustice.
Having ourselves or relatives in the genetic database also opens to door to our genetic information becoming available to law enforcement. Despite privacy policies of the DNA company, using a sample from a crime scene, investigators found the Golden State Killer by matching his DNA to a relative's who had uploaded their genetic data to a public family tree database. The investigation was conducted without a warrant and against the privacy policies of the company. How much power does law enforcement have, and where is the line drawn between private information versus the safety that may be brought about by accessing our genetic information?
Finally, it is troubling that our genetic data is susceptible to being stolen. While genome companies suggest that they store our genetic information in secured databases, there have been hacks resulting in millions of users stolen genetic data. This genomic information can be used for marketing purposes, for discrimination, and potentially for eugenics.
Conclusion
There is appeal and excitement in finding long lost relatives and getting an idea of where one's family might have originated from. It provides a greater sense of identity. However, forfeiting our genetic data to find out this rather unreliable and misleading information comes with serious risks. Given that our society values and strives towards efficiency, it is not unimaginable that genetic information as a sort of mathematical predictor of 'success', reliability and potential health issues will be highly sought after and used to get an edge on the competition. Currently, there are regulations which inhibit genetic data from being used in discriminatory manners. HIPPA requires that individuals consent before giving their genetic data. Further, the Genetic Information Non-Discrimination Act (GINA) states that your genetic information cannot be a factor in health insurance benefits, employment, and eligibility for premiums. We must continue to ensure that these policies and guidelines are adhered by. Otherwise, inequality will become a greater issue than it already is. Autonomy will be diminished for those who are deemed unqualified based on their DNA, and issues of justice will perpetuate within those who may have less 'desirable' traits as deemed by those in power. We must continue to inform the public with respect to the dangers of providing DNA to companies that at some point or another may lose your data or be obliged to give it to the government. International discussions should continue to promote the regulations that are currently in place, and that will be needed as further developments are made in the genetic testing industry.
This page was created by Bioethics graduate student Flavius Rusu.
Flavius Rusu is a second-year graduate student at the Bioethics Institute. He is the Craves Scholar and manages the content for the Bioethics Hub.
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/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."
The Bioethics Institute Hosts
THE ETHICS OF GERMLINE MODIFICATION
On February 11th, the Bioethics Institute hosted a symposium titled The Ethics of Germline Modification. The evening consisted of three 20-minute lectures centered around the cutting edge of genetics. The first lecture was from Bioethicist, and Bioethics Institute Director Dr. Roberto Dell'Oro, who introduced gene editing in his talk titled, Uneasy Journey of Embryo Experimentation. Dr. Dell’Oro began his discussion with the 2018 groundbreaking news of the first HIV resistant babies. The genetically edited babies were a product of Dr. He of Shenzhen University in China and rang the moral alarm among the global bioethical and scientific communities. Dr. Dell’Oro continued by outlining and exploring the intersectionality of the ethics in medical research and the ethics of artificial reproduction technologies (ART).
The second lecture was from health law attorney, Jennifer Gumer, who spoke to The Ethics of Germline Modification. Professor Gumer’s discussion parsed out the question of whether the gene-editing science technique can truly be contained to therapeutic uses. She traversed the principlist distinctions of nonmaleficence, beneficence, and justice in the treatment of replacing and editing disease-related genes, the desire and demand for personal and neonatal enhancement, and the democratization of the science. The third lecturer was legal expert, Cesare Romano J.D., who focused on the international context of this controversial new technology. His lecture was titled, The International Regulation of Human Germline Genome Modification. Professor Romano highlighted the regulatory environment and substantive provisions in Intergovernmental Organizations active on Human Genome Modification such as; UNESCO, WHO, UN General Assembly, UN Human Rights Council.
Click below to watch full lecture.
ADDITIONAL RESOURCES
