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Thread: Ethics in Studies of Population Genomics

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    Ethics in Studies of Population Genomics

    The field of population genomics discovers lots of interesting things for sure, and it has created an array of benefits in the real world - such as reducing the cost of healthcare for patients and facilities alike (disease research). However, the field carries some social consequences as well. This thread is dedicated to discussing the ethical issues in population genomic research.

    Ancestry-DNA testing services such as ancestry.com and 23andme often promote the idea of DNA uniting people together, and showing "how much we are related." However, the truth is that these tests don't really end racism. If anything, they augment support for racism. They hyper-endorse the notion that our DNA should define our unity to people, who we are as people, and what culture we are supposed to belong to. Since people of different ethnic backgrounds will score very different ethnicity estimates on these tests, using DNA to bring unity will only unite people of similar backgrounds, as they will be the ones scoring similar ethnicity estimates and will more likely to be cousin matches. This is not to say that direct-to-consumer ancestry testing is inherently evil in nature, but the commercial approach is pretty tacky and problematic.

    Most of our studies are done by Westerners, and as such, we label the genome in a very west-centric way. Historically, the west has invented categories such as "European," "African," "Asian," and "American" that they have then imposed on the rest of the globe. Often times, geneticists label non-western populations using colonialist, racist terms (i.e. Berber vs. Amazigh). However, genetic variation clearly doesn't fit neatly into any of those categories, yet it still gets labeled that way. The way Western geneticists define non-westerners may not reflect how they identify themselves. Had it been another group of people, our understanding of what "populations" exist would be completely different.

    Also importantly, there have been many instances where geneticists have taken samples from non-western ethnic groups, and did stuff with the samples that weren't communicated to the participants. This is a major flaw.

    Further, we must be careful that our work does not disturb core cultural ideas or practices. For example, we should not use genetics to make claims such as "The Kalash are not Greeks." That would be infringing upon sacred cultural beliefs. This is a tough case, because although the truth should not be held, it would be disastrous and distressful to an entire ethnic group if they are exploited and their sacred cultural beliefs on their origins are dismembered. We should ask ourselves "is the world better off knowing this information?" And in many cases, I would say that it isn't. It only creates land disputes, disturbs sacred cultures, and emotional distress to members of the culture being studied. With the large amount of authority given to scientists these days in Western society, our work has the power to shape social dynamics, and the power to create or destroy relationships with people or groups of people. We must be careful in our wording when presenting information on our participants ancestry, so that it doesn't disturb their culture. In many western nations, research is legally considered invasive if it intrudes and destroys core cultural beliefs and relationships. Thus, while the truth doesn't have to necessarily be hidden, it must be presented in a way that doesn't harm any cultures.


    feel free to add more to the thread.

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    Lucidly, the study of disease in population genomics has an array of benefits. However, while research towards disease propensities in different human populations is important and should be discussed in the scientific community, population geneticists must be cautious when studying populations — especially marginalized ones — as the presenting of their findings in a poor manner can cause said marginalized populations to become even more marginalized than they were. Identifying disease risks among different populations could be a source of discrimination against people within those populations when they apply for health insurance, employment, and car insurance. Additionally, the findings could cause emotional distress to members of the population, effect the way society views that population and how the population views themselves alike. It can even harm relationships people have with each other.

    A prime example of this exists in many studies of diseases associated with Ashkenazi (European) Jewish people. There are a prevalence of diseases that geneticists have delineated as being “unique” to Jewish people. Two of the most notable are Parkinson’s Disease and Tay-Sach’s disease.

    Although the counseling service may seem benign in nature and appears to help couples make decisions about children, Gina Kolata reveals darker aim of the screening. The screening, which tells couples of Jewish descent whether they are likely to have a child with one of the diseases associated with Jews or not, encourages couples who are at risk to separate.

    …the goal is to discourage marriage or even dating between people who are at risk for having a child with a genetic disease.
    By a decade upon its inception in 1983, the results of Dor Yeshorim screening has caused conflicts in romantic relationships, leading 67 couples to separate on the premise of their genetic screening.


    Further, the study of diseases among Ashkenazi Jewish and African-American populations can amplify prejudice and discrimination against them. As S. Leherman, author of Jewish Leaders Seek Genetic Guidelines (1997) highlights

    Such findings, which have already led to Jewish groups being targeted as a potential market for genetic tests, could create the perception that Jewish people are unusually susceptible to disease … As a result … anyone with a Jewish-sounding name could face discrimination in insurance and employment as companies struggle to keep down health care costs.
    Going back to sickle-cell disease in African-Americans, research has shown that diseases associated with African-Americans, such as sickle-cell anemia, are largely underfunded in research compared to diseases not solely associated with African-Americans. As the late Judy Stone, former American journalist mentioned, sickle-cell disease — largely treated as a “black” disease, has major problems with under-funding of research and treatment towards the disease. Additionally, Stone displays how

    one aspect that was striking was the overlap between states refusing the Medicaid expansion and the map of distribution of African-American populations and sickle cell.
    Although the aforementioned correlation could be more related to economic factors or other factors as opposed to solely being the result of racist political factors, there is indeed a remarkable correlation between a state’s rate of African-Americans suffering from sickle-cell disease and their decision to deny the Medicaid expansion.


    Additionally, the study of disease in population genetics can cause medical staff to affirm problematic stereotypes in their heads which have deleterious effects on the health their patients. A 2009 study conducted by Dr. Procia T. Bradford, a dermatologist, has highlighted that

    When skin cancer occurs in people of color, patients often present with an advanced stage, and thus, worse prognosis in comparison to Caucasian patients.
    Additionally, the study reports that the 5 year survival rate for people with skin cancer is 22% lower in people of color than it is in white people (70% vs 92%). This under-diagnosis of skin-cancer in patients of color is likely due to the stereotypes surrounding who gets skin cancer and who doesn’t, leading to the disparities. Bradford also stresses that

    Health care providers must maintain a high index of suspicion when examining skin lesions in skin of color
    and attributes the under-diagnosis to the fact that

    Data have been limited for non-white populations, making accurate determination of incidence and mortality difficult

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    Lastly, geneticists must clearly emphasize the limitations of their studies in the area of health/medicine. Popular direct-to-consumer ancestry and health trait testing services such as 23andme can have a whopping 40% false-positive rate for their results. Despite this large false-positive rate, consumers have made life-changing decisions based off of their health results, some even without consulting with a medical professional. Similarly, doctors and policy makers have attributed too much credit and authority to a service that has such a large false-positive rate. Not emphasizing the limitations of our research can greatly harm people.



    Furthermore, all of this is not to say that population genetic research in disease isn’t indispensable. As demonstrated, it has saved lives, brought awareness to diseases, and has significantly cut the rates of people dying from inherited diseases. Being “ancestrally aware” in medicine is extremely requisite to fighting diseases. And overall, I think the aims most population geneticists have when researching disease is to save lives. That being said, us population geneticists must work to ensure that our work is always serving for the good, and work hard to eradicate things that could harm people. I know that we are all capable of doing this, as our field is made up of intelligent, bright, and passionate minds.

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    This is a tastefully done take at the issue; unfortunately, it's impossible to engage the topic of ethics without engaging political/religious views people have. I hope this thread can spur civil discussion.

    In the case of disease susceptibility and insurance; if population A is on average at higher-risk they could become discriminated against in employment as that disease poses an additional healthcare cost which employers would incur.
    What is the solution? Allow healthcare companies to charge by the individual and to the individual?
    Hypothetically this would disentangle healthcare costs from employment, solving that source of discrimination.
    The implementation of charging to the individual would have much farther reaching consequences; smokers, drinkers, and obese persons could all be charged differently because of differing propensity towards diseases.
    Even if it were implemented it would solve nothing. Population A could end up paying more on average for health insurance because of disease susceptibility. That would undoubtedly be perceived as discrimination.

    Cost is equal = discrimination
    Cost is unequal = discrimination
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    Interesting topic but I'll do a little OT: "Berber" isn't a "racist colonialist" term though. It's originally an exonym indeed but the greek term (barbaros) was used for various non-greek[-speaking] populations around the Mediterranean and Europe, but just happens to have survived in North Africa for "Berbers", probably becoming commonly used only after the Arab conquest.

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    Quote Originally Posted by Ignis90 View Post
    Interesting topic but I'll do a little OT: "Berber" isn't a "racist colonialist" term though. It's originally an exonym indeed but the greek term (barbaros) was used for various non-greek[-speaking] populations around the Mediterranean and Europe, but just happens to have survived in North Africa for "Berbers", probably becoming commonly used only after the Arab conquest.
    You are right, Ignis90. Also, with regards to the Kalash, I have read that their claim of descent from Alexander's soldiers is actually a 19th century invention triggered by western colonialism and influence (probably because of their distinctive looks to the western colonialists), so that would make claiming Greek descent for the Kalash western colonialist propaganda rather than the other way around. In any case, belief of descent from Alexander's soldiers is not central to the Kalash belief system nor universally shared by the Kalash.
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    Quote Originally Posted by Onur Dincer View Post
    You are right, Ignis90. Also, with regards to the Kalash, I have read that their claim of descent from Alexander's soldiers is actually a 19th century invention triggered by western colonialism and influence (probably because of their distinctive looks to the western colonialists), so that would make claiming Greek descent for the Kalash western colonialist propaganda rather than the other way around. In any case, belief of descent from Alexander's soldiers is not central to the Kalash belief system nor universally shared by the Kalash.
    That was just an example because enough of the Kalash strongly believe they are descended from Greeks. Probably not the best example, but I wrote this post at like midnight and was tired, haha. Moreover, I think my points in the ethics of disease studies in our field is what is more interesting to discuss.

    It is a pretty hard topic to deal with. Our field will reveal controversial things no matter what. We just have to make sure the safety and security of our participants is assured.

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    Quote Originally Posted by Ignis90 View Post
    Interesting topic but I'll do a little OT: "Berber" isn't a "racist colonialist" term though. It's originally an exonym indeed but the greek term (barbaros) was used for various non-greek[-speaking] populations around the Mediterranean and Europe, but just happens to have survived in North Africa for "Berbers", probably becoming commonly used only after the Arab conquest.
    This might be true, but I know a lot of Berber activists who are against the term, and it does stem from a word basically meaning "barbarian."

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    Geneticists are obliged to make sure that anti-discrimination laws are being enforced whenever people of populations we study apply for health insurance, employment, and so on. When studying populations of people who are from countries that lack anti-discrimination are being studied, we have a responsibility to make sure we are advocating for their rights. Lastly, we must ensure that medical staff have a better understanding of the relationship between ancestry and disease, so that people of certain demographics are no longer under-diagnosed for certain diseases and people of other demographics aren’t over-diagnosed.

    Further, we must observe how our work plays a role in law and policy making, and make sure that it does not harm our participants in any way. Our work can easily be used by law makers to uphold and create new discriminatory laws. Wang, author of Human Population Genetic Research in Developing Countries: The Issue of Group Protection (2013), leaves a caveat expressing that,

    Stigmatization of certain groups could include claims that a certain population is more prone to particular diseases, such as schizophrenia, or behavioural problems, such as alcoholism. The public’s view of genetic determinism and reductionism could exacerbate this discrimination. If a HGPR result revealed that Miao nationality people have a genetic predisposition for alcoholism, for example, each member of the Miao might face the risk of higher automobile liability insurance premiums that other people, based on the perceived risks of higher numbers of car accidents as a result of the misuse of alcohol.
    Us geneticists must be aware of the fact that lay people will be reading our work, too. In a society where science, including genetics, is upheld as the ultimate truth without any question, our work has a lot of power to construct social dynamics. It also has a lot of power to create or destroy relationships with people. Therefore, we must be careful to make sure our work cannot be misinterpreted by lay people for malicious agendas — such as the agenda of white supremacy. When our work is being used to support egregious movements and statements, it is our responsibility to stand up against those movements and statements.

    Likewise, we have to make sure we do not disturb the practice of other cultures by intruding the populations and asserting westernized genetic delineations on them and their culture. This can cause emotional harm to those being studied, and can change the way the group feels about themselves in a negative way. As Wang notes,

    Internal harms are the potential risks of harm which may occur inside the target groups of HPGR. They include the group’s self-conception of genetic determinism and self-stigmatization. For example, ‘we Jews are defective because our genes make us prone to cancer’ and/or ‘we American Indians are defective because our genes make us prone to alcoholism.’
    As Wang stresses, pyschosocial stress and the obstruction of family life are widely recognized by researchers as vital harms that should not be risked. Additionally, the institutional review boards (IRBs) in several nations holds that community or group stress, in addition to the intrusion and disruption of a community or core culture should also be treated as an important violation of research.

    Moreover, we must advocate for gaining attention and support for more research towards treatments for diseases like sickle-cell anemia, and diseases prevalent in other minority populations that have been largely ignored.
    Last edited by Eвa; 06-12-2018 at 02:11 PM.

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    Quote Originally Posted by Eвa View Post
    Moreover, we must advocate for gaining attention and support for more research towards treatments for diseases like sickle-cell anemia, and diseases prevalent in other minority populations that have been largely ignored.
    That would just publicize the susceptibility difference and lead to more discrimination. Not saying that justifies anything one way or the other, but everything has positives and negatives, it's dangerous and counterproductive to look at only one side.
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