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"Is There Really a Relationship between Genetics and Social Location"[1]

 

[1] “When [Jesus] went ashore, [Jesus] saw a great [crowd];
and [Jesus] had compassion for them and cured
their sick.” (Matthew 14: 14)

 

[2] "I am involved in the genetics of health disparities
because African-Americans MUST be involved
in research on the human genome if our communities
are to benefit optimally from the rapid growth in
scientific knowledge on health disease, AND
opportunities for economic growth and development."[2]

[3] “The Negro death rate and sickness are largely matters
of condition and not due to racial traits and tendencies…”[3]

 

 


Introduction

[4] A lay person who participated in a focus group study on issues related to genetic research and communities of color said the following:

“There is a sense of helplessness with science – the more science,
the more you move down the path. All you can do is wait and see. I don’t
know if that’s a healthy mindset [for] society to have, that people can
go forward just because they can. . . . Somewhere society is going to put
its foot down. I think we need to grab hold of some moral values before
we just keep pushing [for] more and more that we think is out there.”[4]

 

Although these words were said almost ten years ago, they capture some of the paradoxical feeling some African Americans have about genetic services. African Americans are not quite sure we should be moving down that path; however, if we do there needs to be clarity about what walking this path involves and about regulating genetic services appropriately. In this lay person’s mind there needs to be some moral values about genetics. In this essay, I want to embrace the challenge of this lay person.

The Problem

[5] In 2000 the U. S. Department of Human and Health Services issued the Healthy

People: 2010: Understanding and Improving Health Report. A collaboratively developed report, the public was invited to participate in guiding the American population toward healthier lives for the next ten years. The Healthy People 2010 Report is guided by two goals, increasing quality of life and eliminating health disparities. The report states that health disparities, especially among racial and ethnic people are “the result of the complex interaction among genetic variations, environmental factors, and specific health behaviors.”[5] What a seismic observation by the federal government!

 

[6] The Report identifies an issue that is becoming a serious one among African American women, breast cancer. “African American women,” the report reveals, “have a higher death rate from breast cancer despite having a mammography screening rate that is nearly the same as the rate for white women.”[6] The Sinai Urban Health Institute declares a similar finding by reporting the mortality rate of African American women in Chicago as 68% higher than white women reported in 2003.[7] The issue, however, is why is there a higher death rate among African American women from breast cancer than among white women. Is it genetic? Is it social location? Alternatively, is it both? Is it possible to relate genetics to the social location of people, as the question is formulated for this paper?

The Primary Question
[7] I will be pursuing an answer to the previous question by reformulating it in this manner: What do Christian African American Lutherans, as responsible moral agents, bring to the discussion of the relationship between genetics and social location?[8]

 

[8] I will proceed in the following manner. First, I will suggest why it is important for genetics to fully engage the social location. I believe it is important to get beyond the ‘race’ question. Race, as imprecise as it is, is one environmental factor among many other factors. Then I suggest that those who provide genetic services may benefit by engaging what I call a theo-historical method of doing Christian African American Lutheran ethics. That method involves looking back into the history of the African American community’s efforts to go forward. My suggestion is that we engage the religious or theological dimension of the African American community’s desire to do something about its health and wellbeing rather than be a sometimes unwilling and passive object. Further, I will suggest what a Christian African American Lutheran ethic might contribute to a conversation with those who provide genetic services. In my view, such an ethic is grounded in a sacred cosmos. Several elements exist: an African American epistemology, an understanding of God, a theological anthropology, and a moral virtue (wisdom).

A Word about Terminology
[9] What exactly do genetics, social location, and health disparities mean? Genetics is the study of heredity. It’s like a recipe that is written in code called deoxyribonucleic acid (DNA). There are ingredients (Chromosomes, 46 of them to be exact with 23 of them coming from each parent) in each human being and they are passed on to our children.[9]

 

[10] Social location refers to environmental factors such as race, gender, social relationships, religious and theological background, sexual orientation, socioeconomic class, age, national background, culture of origin, geographical location, vocational

location, and educational background.[10] It is a way for us to get to know people beyond simply greeting them with, “Buenos dias, Como esta?” We also learn something about a neighborhood. In some circles, especially Liberation Theology, this is called doing ‘social analysis’ or so-called ‘contextual theology.’ By definition, then, yes, there is a connection between genetics and social location. These environmental factors shape who we are, what we think and feel about the common good, what we think and feel about God's people, and what we think and feel about the Triune God, and God’s work in the world. It also shapes our sense of responsibility to our neighbor and our sense of justice. Moreover, these environmental factors should shape the science of genetics, the practitioners of genetics, their policies, and their best practices.

 

[11] The terms disparity or health disparities are being used to describe health differences between populations groups. They are not meant to signal a condition as being morally right or wrong. They are simply a description, a signal, of what is experientially real in the health experiences of a particular group in the general population. A danger, however, lies in choosing the population with whom the racial or ethnic group is being compared and how that group is chosen? Who has the power to choose the group? Whether a condition is morally right or wrong is the second act; that is, after one gathers the data and analyzes it, a judgment is made as to whether it is morally right or wrong. Nevertheless, I am following the definition of health disparities offered by the government’s Healthy People 2010. It defines a health disparity as “…differences that occur by gender, race or ethnicity, education or income, disability, living in rural localities or sexual orientation.”[11] In my view, this definition suffices for the needs of a theologian or ethicist.

Encountering More Than the 'Race' Question

[12] Over the last three years I have been on somewhat of a journey. My initial foray was into biomedical ethics. My research and reading involved becoming familiar with principlism[12] and how African American and Womanist ethical scholars were writing about that particular theory in biomedical ethics. The writings were slim to say the least.

I continued my research but expanded it to include other communities of color, feminists, and faith traditions, both nationally and internationally.

 

[13] Here my journey took a turn. I was drawn into the discipline of genetics. I learned several family members had genetically based diseases. Genetically based concerns were brought up in classes I taught at the seminary. Therefore, I needed to become familiar with genetics. There was a little bit of personal self-interest. I wanted to be of some service to my family. There was also a vocational interest. I wanted future church leaders to be prepared for leadership on health issues. I also wanted students to have the capacity to work toward eliminating health disparities and inequalities in their communities when they graduated from seminary. I made an astounding discovery. There has been an enormous development in the study of the relationship between genetics and various dimensions of social location. For example, a search of the American Theological Library Association (ATLA) Religion Database revealed a growing literature between genetics and race.[13] Some scholars feared the use of ‘race’ as a category in bioethics would further enhance the concept of difference between the so-called races. Patricia King, a lawyer, offered such a voice.[14] Pilar Ossorio and Troy Duster offer a different type of argument on the connection between race and genetics. They are concerned about the reification of race and behavior. They believe if researchers were more concerned about how race is more a consequence than a cause, they may be able to get beyond the debate about defining race.[15] The arguments are complex and highly nuanced.

 

[14] In 2003, a major conference was held at the historically Black Howard University in Washington, D. C. on Human Genome Variation and ‘Race.’ Again, the big debate was over the viability of using ‘race’ as a classification in research. It appears a general consensus emerged emphasizing that genetic variation was distributed across populations due to various patterns. There was less a consensus, however, about the use of ‘race’ as a proxy for genetic and non-genetic factors. Yet, some scholars thought the use of ‘race’ was helpful and should not be ignored.[16] Some African American geneticists thought the whole matter could be resolved by using the word ‘ancestry.’[17]

 

[15] One important thing to note about these two examples was the failure by scholars and scientists to engage one of the enduring institutions in the African American community, the African American church. Not withstanding the contributions of African American womanist ethicists Emilie Townes and Cheryl Sanders, African American ethicist Samuel Roberts or theologian James Evans, I encountered no other theological or ethical voices.[18]

 

[16] It seems to me that if genetics is to have a connection with social location, it is going to have to encounter more than the ‘race’ issue. The main reason for this is that by focusing on race one only deepens and enhances what Joseph Graves calls ‘the race myth.’[19] According to the race myth, what one sees counts more than what science shows them. Said differently, racial categories are developed and humanity is ranked according to phenotypical differences such as skin color, hair, body type, and facial features. Immutable differences are more popular than variable ones. Of course, this becomes biological determinism and a kind of cultural ideology.

 

[17] There are several competing theories of race today. According to one, driven by a dominant cultural ideology in American society today, people normally experience “color-blindness.” That is, when one sees an African American person, one does not really “see” an African American person. One just sees a human being. In other words, one has been “socialized,” by family, church, school, politics, and the economic system; and yes, rewarded to ignore reality in order to conform to the dominant cultural ethos.[20]

 

[18] A competing theory of race is “race consciousness.” Race consciousness is an attempt, by African Americans, to link one’s identity globally. While African people may be separated by distance on five different continents, they are part of one community. They are unified. Peoplehood becomes a key concept. “I am, because we are; and since we are, therefore I am” African people are known to believe. Individually, African people may be one; however, through our experience culturally and spiritually we are a community. In the United States this was best expressed through the creative force of the Harlem Renaissance of the 1920s, or through Pan-Africanism initiated by W.E.B. Du Bois. The African American National Anthem, “Lift Every Voice and Sing” written by James Weldon Johnson and J. Rosamund Johnson is another expression of cultural unity.

 

[19] An appealing theory, to me, is the “race formation” theory. Michael Omni and Howard Winant define race formation theory as “the sociohistorical process by which racial categories are created, inhabited, transformed, and destroyed.”[21] I find this an inviting way to talk about race. First, it is a sociohistorical process. That means race is real and situated in everyday experiences. Second, racial categories are created and inhabited. Said differently, race is noticed. While this may lead to some stereotypes and false judgments; nevertheless one cannot say, “I cannot believe my lying eyes.” Third, once racial categories are inhabited, they can be transformed and destroyed. We can name it and locate it structurally and historically and we can get on with the business of changing it. While race formation theory is not distinctively Christian, it comes close to being an Christian account of race.

 

[20] There is a fourth way of talking about race, the Christian vision. Galatians 3: 28, emerging out of the 19th century, became institutionalized as a non-racial understanding of the Gospel by the African American church. Identified by Peter Paris, an African American ethicist, as the “Black Christian Tradition,” this tradition articulated a central premise of the African American Church. In non-sexist language this tradition proclaimed that God creates all people and all people are related to each other as brother and sister. Said differently, African American religion and the church institutionalized an anthropological principle that would serve as a prophetic witness and judgment on society and main line Christianity.[22] Jesus has overcome all humanly constructed barriers.

 

[21] Given the complexity of the ‘race’ question in the cultural history of the United States, it may be useful for the practitioners of genetics to encounter the religious and theological tradition(s) of African American people. The African American religious and theological tradition(s) must be encountered in order to convince African American people to see the benefits of genetic research, genetic testing, genetic screening, and the possibility of economic development as suggested in the epigraph at the beginning of this essay.

 

[22] The African American church in the African American community is the most enduring institution in the African American community. It has probably been one of the most studied institutions in the community. It is perceived as an institution that helps African American people "not forget where they came from.” The engagement, by African American scholars, with this lively religious and moral tradition testifies to how the African American church carved and still carves out public space for more than 20 million African American people to exercise moral agency. Moreover, the African American church continues to feed the spiritual life of African Americans in predominantly white denominations and encourages them to express their cultural understanding of faith. One cannot persuade the African American community to engage those who provide genetic services without engaging the African American church in its diverse expression! That being said, I want to suggest a method for moving toward a Christian African American Lutheran ethical contribution on genetics.

Looking Back, Going Forward

 

[23] If African American Lutheran congregations are going to be partners in eliminating health disparities and health care inequalities in the African American community, I believe it is essential for those who provide genetic services to connect with these congregations and learn how they “look back and go forward.” Notice I turned the sentence around. Perhaps geneticists approaching African American Lutheran congregations will lead those congregations toward investigating their heritage and the heritage of African American denominations and their connection to health care generally and genetics in particular.[23] The first place to begin is by looking back.

Looking Back
[24] One of the most difficult and hard-to-grasp debates is about the meaning of “culture.” I found this true when I began teaching an “Introduction to Christian Ethics” course. The course was taught from a multicultural perspective. I would ask the students to name and claim their culture. Many of the white students had difficulty in this area. They would struggle with understanding what I meant by their “culture.” They did not think they had a specific culture. It appeared as if they had been socialized into a culture of “racial color-blindness.” Race or culture was not a topic of discussion; it was a non-issue. The lack of discussion about race and their own “whiteness” (i.e., culture) contributed to a sense of “tolerance.” One could argue that Paul’s thinking in Galatians 3:28 may have been central to their thinking; however, this was never expressed.
 

[25] On the other hand, students of color were quite clear about their culture. They knew their culture because of their experience with racism. Through no fault of their own, their families, or their ancestors, they knew they were “assigned” by society and sometimes with the support of the church, to a specific cultural group.[24] My purpose in all of this was to raise the question: where do you go to gain knowledge about exercising moral agency in addition to the scriptures, confessions, and tradition(s)? Again, students of color knew what I was talking about, our culture. Our culture provides through

testimonies, songs, poems, various types of literature, prayers, sermons, and symbols means for us to ground why we decide to go in a particular direction, make a particular moral decision, and on what principles we make decisions. Said differently, God is present in human labor, that is, in the making of culture, including the creation of symbols.

 

[26] The Akan of Ghana have a beautiful proverb that exemplifies the notion of connecting the community to its cultural tradition or culture. The proverb is, “to go back to tradition is the first step forward.” The Sankofa bird symbolizes this proverb. This bird has a long neck that stretches backward to its tail. It stands on three steps and the words that go with this symbol are "go and fetch it." To go back to the experience of our ancestors one learns what the mission of the African American church was in the area of health and wellness. It also means learning what may be the church’s mission is in the future. In order to understand and know what a Christian African American Lutheran perspective on genetics is, one must go back and fetch what has been the tradition on healthcare and healing.

Begining with the Body
[27] A significant assumption in understanding the African American experience with the health care industry in the United States is the status of the African American body. Conceptualized in a certain time and space (for the sake of this paper, slavery), the bodies of African American people have not been their own. Before embarking on the Middle Passage doctors gave slaves a physical examination. The sole purpose of these examinations was to determine the value of a slave’s body. Moreover, what would be their dispensation once they landed in the West Indies? Slaves who got sick or developed any type of illness were thrown overboard. From the beginning, slavery in the so-called “new world” served one purpose, economic. Women who could not “breed” or men who could not produce in the fields were of less value to the slave master.

 

[28] Among the most egregious examples of where the African American female’s body was not her own was the “scientific” work of J. Marion Sims (1813-1883), the “father” of gynecology. What makes his accomplishments astounding is that they were done at the surgical expense of African American women. Without going into much detail, Sims’ contribution was in the field of gynecologic surgery. Through cruel experimentation and exploitation of three African American women (Betsey, Lucy, and Anarcha), Sims performed surgical procedures (in public and without anesthesia) which brought him fame, including hospitals named after him. Sims own negative race-based and class-based attitudes; namely, he would never perform such experiments on middle-class or upper-class white women reflects how acceptable medical exploitation of poor African American women slaves and their bodies were at the time.[25] Over time, the African American female’s body became a place of memory.

[29] Another place of memory for the African American body more directly related to genetics is the confusion about Sickle Cell Disease (SCD) and Sickle Cell Trait in the 1970s. Elsewhere the African American community’s experience with SCD has been documented.[26] Dorothy Roberts, however, makes an interesting observation about certain tendencies that African Americans may have toward genetics, especially as it relates to women’s reproduction. Roberts contends that African Americans have an aversion to anything related to genetic marketing. That is to say, African Americans have resisted anyone defining them or assigning their personal identity according to biology. Thus, they have a desire to define themselves more as a political or cultural group. Moreover, as Roberts contends “a Black parent’s essential contribution to his or her children is not passing down genetic information but sharing lessons needed to survive in a racist society.”[27] The abstractness of genetics moves to embodied human beings fully sharing wisdom and knowledge that is based on lived experience. More about this later in the article.

The African American Church and Health Care
[30] White Christian churches in the United States, like many other institutions in society, faced their share of racism and racial discrimination charges. In the late 18th century, several African Americans left a congregation in Philadelphia, Pennsylvania because of racial discrimination. Upon leaving the congregation, African Americans formed the Free African Society (FAS), the precursor of the African Methodist Episcopal Church. Organized by Richard Allen and Absalom Jones, the FAS, "without regard to religious tenets, provided the persons lived and orderly and sober life, in order to support one another in sickness, and for the benefit of their widows and fatherless children."[28] Two things one notices about the FAS. First, it was organized principally as a non-religious society. Organization as a religious institution came later. Second, support for one another in sickness was germane to its mission.

 

[31] This part of the Free African Society’s mission is rarely made public. During the Yellow Fever Epidemic of 1793, members of the FAS offered their services to citizens of Philadelphia although they were discriminated against and thought to be the carriers of the devastating plague. Attitudes did not change until African Americans began to also die from the epidemic! Nevertheless, members of AFS provided nurses who responded to numerous calls for services and consistently provided those services for a small fee or free of charge. While white citizens fled Philadelphia, including President George

Washington, who wanted to protect his wife, African American members of FAS remained in the city to relieve white citizens of their misery and to properly care for them.[29]

 

Responding to Racism

[32] The towering figure of twentieth-century intellectual life, W. E. B. Du Bois asserted in his 1903 classic, The Souls of Black Folks, “The problem of the twentieth Century is the problem of the color-line,—the relationship of the darker to the lighter races of men in Asia and Africa, in America and the islands of the sea.”[30] There is little doubt that Du Bois’s prediction was ringing true before the new century arrived! Despite the continued experience of racism in medicine, principally through the lack of hospital care or segregated hospitals, brought on by the “so-called germ theory,” (whites would get sick if they were touched by African American people) African Americans began to establish their own institutions.
 

[33] Vanessa Northington Gamble’s magisterial work on the development of the African American hospital movement details how various parts of the African American community responded to this new opportunity to serve itself. For example, when Emma Reynolds was refused admission to all of Chicago’s nursing schools because of her race, she went to her brother who was a minister. He, in turn, went to Dr. Daniel Hale Williams, the African American doctor who performed the first open heart surgery, for assistance. The result of their work was the establishment of Provident Hospital and Training School in 1891. Although Provident was initially established as an interracial hospital, it evolved into an African American hospital reflecting the racial politics of Chicago. When society closed its doors on African American people, God provided another door for African American people to walk through. Building health institutions that involved religious institutions was one door.[31]

[34] The African American community also initiated self-help activities such as the National Negro Health Movement. In 1915, the Virginia affiliate of the National

Business League established a health week to call attention to the high morbidity and mortality rates of black Virginians. Booker T. Washington, the principal of Tuskegee Institute and president of the National Negro Business League became interested and moved the program to Tuskegee. From fifteen years, African American communities across America participated in various activities to promote good health. Churches became places where the message of good health was preached. In addition, African American women exercised activist leadership in the health care arena.[32]

Going Forward: An Emerging Perspective on Genetics?
[35] Since the early 1970s, there has been some debate about the involvement of African American people in the discipline of bioethics, especially from a religious and theological perspective. Preston N. Williams, an African American social ethicist anticipated this concern. In a conference on ethical issues related to biology and medicine, Williams called for greater participation of African Americans in discussions on genetic engineering, organ transplants, and the problem of population control (reproduction rights of African American women). Any further discussion, Williams suggested, continues to exclude African Americans from participation in biomedical science.[33]
 

[36] It was almost 20 years later that an African American theological/ethical voice was heard on biomedical ethics. In 1992, a conference brought together scholars from multiple disciplines and medical practitioners for dialogue. This interdisciplinary gathering wrestled with two fundamental questions, "Are there African American perspectives on biomedical ethics?" and "if there are, how are they expressed or articulated?" Simple, yet, highly complex questions given the development of the discipline of biomedical ethics!

[37] Three positions emerged from the conference. Some scholars and practitioners suggested that biomedical ethics, as a universal enterprise, requires no specific ethnic perspective. They further asserted there is only one health care system and ethical system that should be employed when making biomedical ethical decisions.[34]

[38] A second position asserted there is an African American perspective on biomedical ethics. This argument suggests that social location, race, racism, social history, and mistrust of the medical industry are contributing factors to an African American perspective on biomedical ethics. Moreover, healthcare experiences and an activist philosophy, with its focus on social justice from an African American perspective, contribute to an African American perspective on biomedical ethics.[35]

[39] An African American Christian ethicist presented a third perspective. An African American bioethical perspective must be one that emerges from the experiences of people of African descent and have the ability to move beyond those experiences. If there is an

African American perspective on biomedical ethics, argues Cheryl Sanders, an African American ethicist on the faculty of the Divinity School at Howard University in Washington, D.C., it resides in its courage to face issues of unmerited suffering brought on by experiences of racism in American society. Sanders further states that the same limitation for a black theology applies to a black ethic. A black ethic must have the capacity to transcend its particularity in order to bring critique on society. Moreover, being unique, having an African American perspective on biomedical ethics, is irrelevant. The larger issue, for Sanders, is a matter of participation and inclusion in bioethics.[36] Sanders provides a very useful analysis on the existence or nonexistence of an African American perspective on biomedical ethics.

 

 

An Emerging Perspective on Genetics?

[40] Following the 1992 Conference at Howard University, James H. Evans, Jr., an African American theologian, published a significant book which includes a chapter titled, “Health, Disease, and Salvation.” Evans’s fundamental argument is that the health problems of African Americans are a theological problem. That is to say, “[t]he question

of who receives quality medical care in our society is, at heart, a question of who shall be saved. The theological issue here is soteriology or our understanding of salvation.”[37] In my view, this is a refreshing argument! The constructive task Evans builds is an understanding of health and healing as culturally understood in the African American community and as it is biblically understood in the healing ministry of Jesus. Salvation and health, in good Lutheran terminology, is a gift of God.

[41] Christian African American Lutherans and Lutherans for that matter would embrace the constructive thinking of Evans on salvation as healing and health. I quote him at length.

Salvation as healing is a central concern in African American Christianity.
In at least three ways this salvation is experienced and draws upon traditions
of African healing and Western soteriology. First, salvation occurs through
the prayers of the faithful. It recalls the incantations used in African healing
and combines it with the salvific power of the Word in Reformation theology…
Second, salvation occurs through the gathered community of faith…The
worshipping community enables, sustains, confirms, and shares in the healing
of its members and thereby becomes the means of salvation. Third, salvation
occurs through the sacraments or ordinances of the Lord’s Supper and
Baptism. It recalls the use of herbal medicines and ritual bathing as healing
practices in African traditional religions and combines them with ancient
christian views on the efficacy of bread, wine, and water. These ritual
practices emphasize the participation of each member of the community in the
salvific presence of Christ.[38]

What we see emerging in Evans’ constructive work may be movement toward an African American Christian perspective on genetics also emerging in Sanders own position.

[42] By 2004, Sanders seems to have modulated her position on an African American perspective on biomedical ethics. In a conference held at Georgetown University, titled "Symposium on African-American Perspectives in Bioethics and Second Annual

Conference on Health Disparities" Sanders presented an essay on how African American postal workers responded to bioterrorism. African American postal workers had been exposed to letters filled with anthrax. The federal government offered medication however, because of certain factors, the postal workers declined treatment because of unpleasant side effects and fear of being treated as "guinea pigs."[39] The workers were going to rely on their faith and God to heal them.
 

[43] Sanders is practicing what I would announce as an African American Christian Perspective on Bioethics. She is looking back to an African understanding of health and healing and an African American understanding of health and healing. Sanders is going forward by applying what she discovered in the experiences of African American postal workers. Like Evans, Sanders understands that health and healing is more than a personal matter. Health and healing is a matter for the whole community. I often recall visiting some member(s) in the hospital and encountering ten or fifteen family members in addition to the person who is lying on the hospital bed. The adage came to mind not “I’m sick Pastor, but we sick Pastor,” meaning the whole family is sick. Sickness is viewed as a lack of harmony. The call of the pastor is to bring that family into harmony with the Triune God. And, that is done through PRAYER. This brings me to the final task of this essay, articulating what I think a Christian African American Lutheran ethic might contribute to a conversation on genetics.

 

“Make Your Mess Your Message”: The Contours of a Christian African American Lutheran Ethic

[44] I want to ask a question. Do you remember where you were when Robin Roberts, the effervescent anchor of the television show “Good Morning America” announced that she had breast cancer? I, frankly, do not remember where I was. I just remember hearing months later that Roberts had breast cancer. Then, several months ago, I finally caught up with my reading of the monthly Ebony magazines.
 

[45] As I sat at the dining room table reading an excerpt of her revised book, From The Heart: Eight Rules to Live By (Hyperion), which details her struggles with breast cancer, tears began to flow. Roberts developed breast cancer, although her family has no history with breast cancer. She described her angst over whether to tell her doctor about that lump she discovered although she went to the doctor for that reason. In addition, she details whether she should tell the Good Morning America audience. After making it through her initial shock with the help of her good friend Diane Sawyer, she describes her encounter with her mother. Roberts shared the advice her mother gave her, "make your mess your message."[40] You may be wondering, what does this have to do with a Christian African American Lutheran ethical perspective on genetics.

[46] The practice of testimony is one that people need today, especially in a society where truth is sometimes hidden. People without economic, political voice and a means for transmitting their truth, like Robin Roberts, often find their voices are not heard. In this context, we need to consider what it means to testify. Although testimony happens one person at a time, that person’s speech takes place in the context of many people listening and encouraging.

[47] Testifying can take place inside church and outside church. Wherever testimony takes place, it is a sacred place. It is an opportunity for God to be present. It is the sanctuary. It is the barbershop and the beauty salon. It is the basketball court and the supermarket line. Testimony takes place wherever God’s people are called together to hear one person share what God is doing in someone’s life and others are listening and encouraging that person to ‘keep on keeping on.’ Testimony takes place in those places ‘everyday’ people create for themselves to discuss, testify, and decide great moral issues of the day without being denigrated by those who have no vested interest in the life of the community. It is in those places that those who provide genetic services will find a Christian African American Lutheran ethical perspective on genetics germinating. Several other elements constitute a Christian African American Lutheran ethical perspective on genetics. Let me begin to name and claim them now.

[48] The first element is an African American epistemology. In order to grasp a group’s ethics or morality, one has to understand how a group knows whether members of the group accurately reflect the core beliefs of the group, the principles upon which decisions are made, and the values which the group hold dear and supreme. This is particularly true when groups, in a multicultural society such as the North American society, encounter each other. The actions of one group oftentimes seem completely irrational to a second group because the basis on which each group assesses the validity of core beliefs, principles, and values claims maybe different. This may be especially true in the debate about the use of ‘race’ in genetic services.

[49] Experience provides the primary datum of a Christian African American Lutheran perspective on genetic services. In her prominent book, Black Feminist Thought, Patricia Hill Collins, describes four characteristics of black feminist epistemology. These characteristics include, lived (concrete) experience, dialogue, ethic of caring, and ethic of personal accountability. It is evident that much of Collins’ African American epistemology is applicable to the African American community at large, especially her concept, the value of lived (concrete) experience. Book learning, Collins, argues is of little importance compared with the lessons taught by experience. I would disagree with her because education has always been a high priority for the African American community. This is evident in the number of schools the African American church has sponsored or started during and following the end of the Civil War. An African American person, whether female or male, needs knowledge and experience in order to survive in a racist society. However, Collins makes an excellent point about experience:

For most African-American women those individuals who have lived
through the experiences about which they claim to be experts are
more believable and credible than those who have merely read or
thought about such experiences. Thus concrete experience as
a criterion for credibility frequently is invoked by Black women when
making knowledge claims.[41]
Testimonies like Robin Roberts’ along with stories by other African American women and their experience with breast cancer are important for African American women to share. Stories, narratives, and testimonies are told because they strengthen and empower women and the rest of the community in their struggle to make their mess their message. Their message is believable and credible because they emerge from their experience and strengthen the whole community.
 

[50] A second element is an understanding of God. I find the suggestion of a “Black

Sacred Cosmos” by C. Eric Lincoln and Lawrence Mamiya a persuasive way of conceptualizing a Christian African American Lutheran religious worldview. On their reading, the whole universe is sacred and the Christian God revealed in the person of Jesus Christ dominates the black sacred cosmos.[42] God is a God who is involved, incarnated, in the history of people from the creation through the resurrection. God is the one who makes it possible for the African American community to survive, to “make a way out of no way.’ This becomes the precursor of liberation to be wrought by a God who hears the voices of the oppressed. God is an embodied God in the person of Jesus Christ.
 

[51] A third element is wisdom. There is a deep hungering among us today for answers to all matters of trails and tribulations. Just tell me the answers and I can get on with my life, some people are prone to say. If it were only so easy! At the same time, there is a deep respect about the activity of God in the midst of life’s realities. As many young people might be asking, where is wisdom to be found for the journey of life? As a Christian we may be prone to say the Hebrew Bible and the New Testament. I would add, of course, our culture. Let me elaborate a little.

[52] As a young person growing up, one of the rituals of my family reunion occurred on Friday evening. All the men (including the college students and young men) gathered (back in the day this was quite a sexist gathering) in my oldest uncle’s room to tell stories. My cousins and I would sit on the floor and listen to our uncles tell how things were in their youth. They told wonderful stories about how they and their brothers navigated life among white people in their hometown. There was a lot of laughter, plenty of stories, and plenty of wisdom floating in the room. Whenever one of the young people tried to share what we were learning in college, they listened intently and then told us the same story about what happened in their day.

[53] The book of Ecclesiastes would sometimes offer a word I think is often overlooked. There it is written,
There is nothing new under the sun.
Is there a thing of which it said,
“See, this is new”?
It has already been,
in the ages before us.” (Ecc. 1: 9c-10)

Sometimes there is among young people a feeling their voices are being silenced, that their concerns are going unheard. Adults are feeling young people are disrespecting them and so desire little or no contact with young people. However, the concern of the story is that the young people do not have the last word on wisdom. In fact, young people speaking in the presence of those older than them violated cultural custom; namely, one only speaks beginning with the oldest to the youngest.
 

[53] The formation of wisdom, the capacity to cope with life in a principled way is more taught than caught. Stated differently, young people are trained by the elders of the community in what constitutes action through example and practice. African American parents, I believe, still expect their children to be in the company of grandparents to learn about those values. Thus wisdom is essential for exercising good judgment which contributes to building the community.[43] And, wisdom comes through training and lived experience reflected on with the elders.

 

Implications for Providers of Genetic Services

[54] What does all of this mean for the relationship between genetics and social location? I think, in the first instance, it means recognizing that some environmental factors other than race may be worthy of investigation. The issue of faith or spirituality may help move providers of genetic services in a different direction than it has been moving. Engaging core theological and ethical beliefs may develop different processes, questions, and relationships with people in a variety of social locations.

[55] Second, by focusing on the benefits of genetics and genetic technology we may be able to overcome health disparities. From a theological perspective that means recognizing that human beings are sinful people and we have good motives. However, focusing on our sin, that is our tendency to do evil and wrong given our history with genetics, fails to convince me about the potential to do right. I much more prefer to announce what we have done right and are doing right with genetics in order to “drown” out what is going “wrong” with genetic technology.[44] Stated differently, we could do better at identifying the best practices of genetics in the language of ‘everyday people.’ We could become ‘media savvy.’

[56] Third, we could stop using the category of ‘race.’ In January 2008 I was a strong advocate for using the category of race.[45] Now, after more reading and reflection, I prefer the category of ‘ancestry.’ For me this is a faith issue. And, it is a contribution an Christian African American Lutheran can contribute to the conversation about genetics with geneticists, especially given the African American history of mistrust with science and medicine. Using race, which is a geopolitical classification, a social construction, does not help us in our public discourse. God sent Jesus Christ into the world. A part of Jesus’ mission was to overcome all human constructions (i.e., race, class, gender, and sexual orientation). Jesus embodies what it means to overcome human constructions that become barriers to our relationships with each other. I think kingdom thinking requires Christians to act as if all of God’s people are God’s people.

Conclusion

[57] In March 1966, Reverend Dr. Martin Luther King, Jr., went to Chicago, Illinois to plan actions against the city’s hospitals because of their racially discriminatory practices.

 

The goal of his activities was to dramatize the health problems of African Americans. “Of all forms of discrimination and inequalities,” Dr. King said, “injustice in health is the most shocking and inhuman.”[46] The difference between the history and discourse of the African American community and that of the majority community around health, health disparities, and genetics cannot be ignored. Avoiding that conversation only contributes to further distrust. African American religious people and Christian African American Lutherans have much to teach those who find themselves with limited exposure to the diverse social locations of communities of color. Yes, there is a relationship between genetics and social location. Non-engagement of the social location, especially its religious and theological dimension, will continue to marginalize an important voice and partner in reducing the gap in health disparities and inequalities. As womanist ethicist Emilie Townes says so poignantly, “It appears that genetics, environment, and inadequate access to health care combine in deadly ways in the lives of far too many racial-ethnic women.”[47] They also combine in deadly ways among the lives of racial-ethnic children and men!

 

[58] Yes, there is a relationship between genetics and social location. It is complex and deep. The relationship between providers of genetic services and the diversity of people living in a variety of social locations begins with individuals who are willing to enter into conversation and those who are willing to take steps towards each other tempered by each other’s history or lack of history together.


 

[a] Richard J. Perry, Jr., is Associate Professor of Church and Society and Urban Ministry; and Director of the Urban Ministry Program at the Lutheran School of Theology at Chicago. He is a member of the ELCA Task Force on Genetics, and he has an abiding interest in issues involving African American bioethics.


 

 

 

Endnotes

 

[1] This is a significant revision of an essay presented at an ELCA Religion and Science Brown Bag

Luncheon titled “True to our God, True to our Native Land: Toward an African American Christian Ethical Perspective on Genetics,” January 2008.

 

 

[2] Sonya Donaldson, “Genetic Research Isn’t Just for Prime-Time Dramas or High-Profile Criminal Cases. Here’s How African American DNA Detectives are employing scientific research to change our lives,” Black Enterprise, November 2006, p. 120. The quote is by Dr. Georgia Dunston, a geneticist.

 

[3] W. E. B. Du Bois, The Health and Physique of the Negro American: Report of a Social Study Made

Under the Direction of Atlanta University; Together With the Proceedings of the Eleventh Conference for the Study of the Negro Problems, Held at Atlanta University, on May the 29th, 1906. Atlanta, Ga: Atlanta University Press; 1906.

 

[4] Quote from an African American participant in the Communities of Color and Genetics Policy Project: Focus Group Phase Report. October 24, 1999, p. 12. Judith Daltuva, MSW, MA, Research Associate,

University of Michigan School of Public Health. Available at: http://sph.umich.edu/genpolicy/webprojectsummary/focus_report.pdf. (Emphasis added by writer. As of December 31, 2008 this report was no longer available online.)

 

[5] U. S. Department of Health and Human Services. Healthy People 2010: Understanding and Improving Health. 2nd ed. Washington, DC: U.S. Government Printing Office, November 2000, p. 12. (Emphasis added by this writer.)

 

[6] Ibid.

 

[7] Jocelyn Hirschman, Steven Whitman, David Ansell, “The black:white disparity in breast cancer

mortality: the example of Chicago, Cancer Causes Control (2007) 18: 323-333.

 

[8] I am using “Christian African American Lutheran” in a very specific manner. “Christian” is faith

orientation. “African American” is geopolitical cultural location. Lutheran is denominational home. I am a child of God before anything else. Thus, Christian is first. One other designation is ethicist and that is  vocational identification. My desire here is to counteract being called a “Lutheran Christian” as if that designation supersedes being a “child of God” first. It does not. Being baptized, as a Christian, overcomes everything that follows being a Christian! It is as Dr. Albert “Pete” Pero has said over the years, “water is thicker than blood.” We act, sometimes, as if our denominational “blood is thicker than our spiritual water” and it is not. That is our sin as human beings.

 

[9] I am following the definition and understanding of genetics offered by Kevin Powell in, “A Basic Guide: Facts and Issues,” in Genetic Testing & Screening: Critical Engagement at the Intersection of Faith and Science. Roger A. Willer, editor. (Minneapolis: Kirk House Publishers, 1998), and Genetics and Faith: Power, Choice, and Responsibility (2008) Chicago: Evangelical Lutheran Church in America, 134.

 

[10] See the recently published Evangelical Lutheran Church in America (ELCA) Study, Genetics and Faith: Power, Choice, and Responsibility, (2008), Section B3, “Genetics and Social Location: How do things look from here?” p. 61.

 

[11] Healthy People 2010: understanding and improving health 2nd edition.,

 

[12] Principalism is a deductive approach that applies ethical theory and principles to a range of problems in bioethics. Tom Beauchamp and James Childress led the development of four basic principles, namely, autonomy, nonmaleficence, beneficence, and justice. These are fully developed in their highly acclaimed, yet controversial book to some, Principles of Biomedical Ethics, 5th Edition, (New York: Oxford University Press, 2001).

 

[13] See for example, Esteban Gonzalez Burchard, MD, et. al., “Latino Populations: A Unique Opportunity for the Study of Race, Genetics, and Social Environment in Epidemiological Research,” American Journal of Public Health, December 2005, Vol. 95, No. 12, 2161-2168, accessed August 19, 2007; Rebecca Tsosi, “Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm,” Journal of Law, Medicine & Ethics, (Fall 2007), 396-411, accessed August 18, 2007; Rose Brewer, “Thinking Critically about Race and Genetics,” Journal of Law, Medicine, & Ethics (Fall 2006), 513-519, accessed October 1, 2006, and Pilar Ossorio and Troy Duster, “Race and Genetics: Controversies in Biomedical, Behavioral, and Forensic Sciences,” (January 2005) American Psychological Association Vol. 60, No. 1, 115-128, accessed October 10, 2008. Examples from the global scene include Ji-Liang Fu, et. al., “Perspectives on Genetics in China,” Annual Review of Genetics, (1995): 29: 1-18, accessed January 27, 2008; J. Makani, T. N. Williams, and K. Marsh, “Sickle cell disease in Africa: burden and research priorities,” Annals of Tropical Medicine & Parasitology, Vol. 101, No. 1, 3-14 (207); and Fernanda Carneiro and Roberto Dos Santos Bartholo Junior, “Maria’s Desire: Considerations About a Moment of ‘Genetic Counseling’ for Breast Cancer” in Globalizing Feminist Bioethics: Crosscultural Perspectives. Edited by Rosemarie Tong with Gwen Anderson and Aida Santos. (Boulder, Colorado: Westview Press, 2001), 212-218.

 

[14] Patricia A. King, “The Dangers of Difference,” ( 1992) Hastings Center Report 22: 35-38 and “The Dangers of Difference, Revisited,” in The Story of Bioethics: From Seminal Works to Contemporary

Explorations. Jennifer K. Walter and Eran P. Klein Editors. (Washington, D.C.: Georgetown University Press, 2003), 197-213.

 

[15] Ossorio and Duster, “Race and Genetics, 116.

 

[16]The papers of the conference were presented in Nature Genetics Supplement Volume 34, Number 11 (November 2004), available at http://www.nature.com/ng/journal/v36/n11s/full/ng1166.html.

 

[17] S. O. Y. Keita, R. A. Kittles, C. D. M. Royal, G. E. Bonney, P. Furbert-Harris, G. M. Dunston, & C. N. Rotimi, “Conceptualizing human variation,” Nature Genetics Supplement Volume 36, Number 11

(November 2004), S17-S20.

 

[18] Emilie Townes, Breaking the Fine Rain of Death: African American Health Issues and a Womanist Ethic of Care (New York: Continuum, 1998); Cheryl Sanders, “European-American Ethos and Principlism: An African-American Challenge,” in A Matter of Principles?—Ferment in US Bioethics. E.R. DuBose, R. Hamel and L. J. O’Connell, editor (Valley Forge: Trinity Press International, 1994), 148-163); Samuel Roberts, “Medicine and Bioethics,” in African American Christian Ethics (Cleveland: The Pilgrim Press, 2001), 237-256); and, James H. Evans, Jr., “Health, Disease, and Salvation,” in We Shall All Be Changed: Social Problems and Theological Renewal (Minneapolis: Fortress Press, 1997), 45-66.

 

[19] Joseph L. Graves, Jr., The Race Myth: Why We Pretend Race Exists in America, with a New Preface by the Author. (New York: Plume, 2004).

 

[20] Lutherans would identify the family, church, politics, and economics as “orders of creation.”

 

[[21]]Michael Omni and Howard Winant, Racial Formation in the United States: From the 1960s to the 1990s. Second Edition. (New York: Routledge, 1994), 55.

 

[22] Although I identify this as one of the elements of a Christian African American Lutheran element to be discussed later in the paper, I discuss it here briefly. I will not say more about it later.

 

[23] See the article by Mary Brophy Marcus, “Finally, a summit about minorities’ health disparities,” USATODAY, accessed at http://www.usatoday.com/news/health/2008-12-15-racial-disparities_N.htm

The importance of this summit, in my view, was that it included the role of the church.

 

[24] See Robert E. Hood, Begrimed and Black: Christian Traditions on Blacks and Blackness (Minneapolis: Fortress Press, 1994). After I completed the manuscript I read Joseph L. Graves, Jr.’s The Emperor’s New Clothes: Biological Theories of Race at the Millennium (New Brunswick: Rutgers University Press, 2001). Chapter 1 may be of interest.

 

[25] The previous two paragraphs are indebted to the fine medical history by W. Michael Byrd and Linda A. Clayton, An American Health Dilemma: A Medical History of African Americans and the Problem of Race: Beginnings to 1900. Vol. 1. With a Forward by Dr. Robert J. Blendon. (New York: Routledge, 2000), 272-275. The social history by Harriet A. Washington is a must read for anyone who is serious about how the African American has experience medical abuse. See Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Broadway Books, 2006), 61-68 for the story about Dr. J. Marion Sims.

 

[26] Genetics and Faith: Power, Choice, and Responsibility, Section B3, p. 63.

 

[27] Dorothy Roberts, Killing the Black Body: Race, Reproduction, and the Meaning of Liberty (New York: Vintage Books: 1997), 260-269, here 262. (Emphasis added by writer.)

 

[28] Lincoln and Mamiya, The Black Church in The African American Experience, p. 51 and “Preamble of the Free African Society,” available at http://www.pbs.org/wgbh/aia/part3/3/3h465t.html.

 

[29] Allen, Richard and Absalom Jones. A Narrative of the Proceedings of the Black people, During the Late Awful Calamity in Philadelphia in the Year 1793. Philadelphia: Franklin’s Head, 1794.

 

[30] W. E. B. Du Bois, The Souls of Black Folk. Introduction by Saunders Redding. (Greenwich: Fawcett Publications, Inc., 1961), 23.

 

[31]Vanessa Northington Gamble, Making a Place for Ourselves: The Black Hospital Movement, 1920-1945 (New York: Oxford University Press, 1995), 14-19.

 

[32] Susan L. Smith, Sick and Tired of Being Sick and Tired: Black Women’s Health Activism in America, 1890-1950 (Philadelphia: University of Pennsylvania Press, 1995), 33-57.

 

[33] Preston N. Williams, “The Task Ahead: A More Open Discussion,” in Ethical Issues in Biology and Medicine. Edited by Preston N. Williams (Cambridge: Schenkman Publishing Company, 1973), 288.

 

[34] William A. Banner, “Is There an African-American Perspective on Biomedical Ethics? The View from Philosophy,” in African-American Perspectives on Biomedical Ethics. Edited by Harley E. Flack and

Edmund D. Pellegrino with editoral assistance by Dennis McManus. (Washington, D.C.: Georgetown

University Press, 1992), 188-192.

 

[35] Annette Dula, “Yes, There Are African-American Perspectives on Bioethics,” in Flack and Pellegrino, 193-201.

 

[36] Cheryl Sanders, “Problems and Limitations of an African-American Perspective in Biomedical Ethics: A Theological View,” in Flack and Pellegrino, 165-172.

 

[37] Evans, We Shall All Be Saved, 46-47.

 

[38] Ibid., 65.

 

[[39]]Cheryl J. Sanders, “Religion and Ethical Decision Making in the African American Community:

Bioterrorism and the Black Postal Workers,” African American Bioethics: Culture, Race, and Identity. Lawrence J. Prograis Jr. and Edmund D. Pellegrino, Editors. (Washington, D.C.: Georgetown University Press, 2007.

 

[40] Robin Roberts, “Robin Roberts shares her breast cancer ordeal,” Ebony Vol. LXIII, No. 12 (October 2008), 130-135.

 

[41] Patricia Hill Collins, Black Feminist Thought: Knowledge, Consciousness, and the Politics of

Empowerment (New York: Routledge, 1991), 209.

 

[42] Lincoln and Mamiya, p. 2-3.

 

[43] Paris, The Spirituality of African Peoples, p. 144-146.

 

[44] See the story told in Genetics and Faith: Power, Choice, and Responsibility, Section B#3, p. 63 about Keone Penn being cured of Sickle Cell Disease.

 

[45] Graves, The Emperor’s New Clothes, Chapter 11 and the Conclusion may be of special interest.

 

[46] Martin Luther King, Jr., Chicago Sun-Times 1966, p. 12.

 

[47] Emilie Townes, Breaking the Fine Rain of Death: African American Health Issues and a Womanist Ethic of Care (New York: Continuum, 1998), 113. (Emphasis added by writer.)

 


 
 
 
© August 2009
Journal of Lutheran Ethics
Volume 9, Issue 8