ORIGINAL ARTICLE

Community leaders’ perspectives on engaging AfricanAmericans in biobanks and other human genetics initiatives

Aaron G. Buseh & Patricia E. Stevens &

Sandra Millon-Underwood & Leolia Townsend &

Sheryl T. Kelber

Received: 26 February 2013 /Accepted: 17 June 2013# Springer-Verlag Berlin Heidelberg 2013

Abstract There is limited information about what AfricanAmericans think about biobanks and the ethical questionssurrounding them. Likewise, there is a gap in capacity tosuccessfully enroll African Americans as biobank donors.The purposes of this community-based participatory studywere to: (a) explore African Americans’ perspectives ongenetics/genomic research, (b) understand facilitators and bar-riers to participation in such studies, and (c) enlist their ideasabout how to attract and sustain engagement of AfricanAmericans in genetics initiatives. As the first phase in a mixedmethods study, we conducted four focus groups with 21African American community leaders in one US Midwest

city. The sample consisted of executive directors of commu-nity organizations and prominent community activists. Datawere analyzed thematically. Skepticism about biomedical re-search and lack of trust characterized discussions about bio-medical research and biobanks. The Tuskegee UntreatedSyphilis Study and the Henrietta Lacks case influenced theirdesire to protect their community from harm and exploitation.Connections between genetics and family history madegenetics/genomics research personal, pitting intrusion intoprivate affairs against solutions. Participants also expressedconcerns about ethical issues involved in genomics research,calling attention to how research had previously beenconducted in their community. Participants hoped personal-ized medicine might bring health benefits to their people andproposed African American communities have a “seat at thetable.” They called for basic respect, authentic collaboration,bidirectional education, transparency and prerogative, andmeaningful benefits and remuneration. Key to building trustand overcoming African Americans’ trepidation and resis-tance to participation in biobanks are early and persistentengagement with the community, partnerships with commu-nity stakeholders to map research priorities, ethical conduct ofresearch, and a guarantee of equitable distribution of benefitsfrom genomics discoveries.

Keywords African American leaders . Communityengagement in research . Genetics . Genomics . Biobanks .

Health disparities . Research ethics

Introduction

Genomics is today’s ascendant science, promising revolu-tionary improvements in the prevention and treatment ofillness, and people all over the globe have pinned their hopeson its success. From public research institutions to commer-cial pharmacogenetics enterprises and gentech startups, from

A. G. Buseh (*)College of Nursing, University of Wisconsin—Milwaukee, 1921East Hartford Avenue, CunninghamHall, Room 569, P.O. Box 413,Milwaukee, WI 53201, USAe-mail: aaronbg@uwm.edu

P. E. StevensCollege of Nursing, University of Wisconsin—Milwaukee,P. O. Box 413, Cunningham Hall, Room 566,Milwaukee, WI 53201, USAe-mail: pstevens@uwm.edu

S. Millon-UnderwoodCollege of Nursing, University of Wisconsin—Milwaukee,1921 E. Hartford Avenue, Cunningham Hall, Room 422/423,P. O. Box 413, Milwaukee, WI 53201, USAe-mail: underwoo@uwm.edu

L. TownsendCollege of Nursing, University of Wisconsin—Milwaukee,P. O. Box 413, Cunningham Hall, Room 527,Milwaukee, WI 53201, USAe-mail: leolia@uwm.edu

S. T. KelberCollege of Nursing Center for Nursing Research and Evaluation,University of Wisconsin—Milwaukee, P. O. Box 413,Milwaukee, WI 53201, USAe-mail: kelber@uwm.edu

J Community GenetDOI 10.1007/s12687-013-0155-z

government funding agencies to corporate investors, fromtechnologists and bench scientists to the individual cliniciansstaffing health care facilities, excitement about the dream ofpersonalized medicine could hardly be greater. And formembers of the public predisposed toward or fighting debil-itating diseases thought to be genetically linked, likeAlzheimer’s, autism, schizophrenia, cancer, and heart dis-ease (Amberger et al. 2009; Green et al. 2011; Miller et al.2007; Watkins and Farrall 2006), the quest for solutions ingenetic screening and therapeutics is of utmost importance.With the momentum the field of human genetics enjoys andthe profit potential of its products, what must not be lost sightof are the implications for populations disproportionatelyburdened by ill health and poverty in the USA and abroad.

African Americans make up one such population dispro-portionately affected by ill health and poverty (Abrahams2006; Agency for Healthcare Research and Quality 2012;Kjellstrom et al. 2007; LaVeist et al. 2009), yet they aregrossly under-represented in DNA biobanks. Population ordisease-based DNA biobanks make the work of genomicspossible. These massive-scale repositories contain tissue andblood samples linked to their human donors’ health histories,behavioral and environmental information, and medical re-cords. The data are stored indefinitely to be shared for multiplelines of research over time. It is essential that these pools ofgenetic data be diverse according to geographic ancestry sothat future clinical applications of personalized therapies canbe available to everyone (Losow 2005; Rugnetta and Desai2011), thus the importance of developing ethnic-specific ge-netic arrays for African, Latino, Asian, and European ancestry.The problem is, to date, donations to biobanks have largelycome from persons of European descent.

There is a lack of information about what African Americansthink about biobanks and the ethical questions surrounding them(Lemke et al. 2012). Likewise, there is a gap in capacity tosuccessfully enroll African Americans as biobank donors. Thepurposes of this mixed methods community-based participatorystudy were to: (a) explore African Americans’ perspectives ongenetics and genomic research, (b) understand their views onwhat facilitates and what obstructs participation in such studies,and (c) enlist their ideas about how to attract and sustain engage-ment of African Americans in biobanks and other human genet-ics initiatives. In this paper, we report findings from the firstphase of the study, which involved four focus groups with urbanAfrican American community leaders.

Background

Enrollment in biobanks bears resemblance to enrollment inclinical studies generally. Researchers have noted time and againthat it is challenging to recruit and retain African Americans inclinical studies (Mills et al. 2006; Sellars et al. 2010). The low

number of African Americans participating in clinical trials isoften attributed to issues of distrust and discrimination experi-enced within the healthcare system (Corbie-Smith et al. 1999;Thomas and Quinn 2008). African Americans also indicate theirreticence comes from knowledge of abusive and exploitiveresearch practices in the past (Jones and Harris 2011; Siminoffand Arnold 1999; Washington 2006; White 2005). TheTuskegee Study of Untreated Syphilis remains the most infa-mous example of unethical medical experimentation on AfricanAmericans. In the Tuskegee experiment, Public Health Serviceresearchers compiled data on the effects of the spontaneousevolution of syphilis among African American males inAlabama. From 1932 to 1972, 399 syphilitic men were leftuntreated to die from the disease, even when penicillin wasreadily available and in wide use as a curative agent (Jones1992). Pain and anger as a result of this study continue to be feltby African Americans who react by refusing participation inresearch (Russell et al. 2012).

Another notorious incident of medical exploitation came tolight with the much publicized book “The Immortal Life ofHenrietta Lacks” (Skloot 2010), which reignited medical mis-trust in African American communities. Mrs. Henrietta Lacks,an African American woman, grew up on a poor Southerntobacco farm, married young, and moved to Baltimore. In1951, after the birth of her fifth child, she was diagnosed withcervical cancer. A Johns Hopkins Hospital physician harvested atissue sample from her tumor without her knowledge. Her cellsdemonstrated an amazing capacity to grow and reproduce indef-initely and became the first viable human cell line, launching theentire biotech industry. Called HeLa cells, they were commer-cialized and have been in continual use all over the world eversince (Hannah 2000).

For more than 60 years, Henrietta Lacks’ cells have beenkept alive in the lab and have played pivotal roles in theprevention and diagnosis of cervical cancer, as well as ad-vances in treatment for a number of other diseases includingleukemia, influenza, Parkinson’s disease, and AIDS (Hannah2000). Mrs. Lacks died 8 months after her cells were taken.While her cells made medical progress and corporate profits,Mrs. Lacks’ children and grandchildren grew up in relativepoverty, receiving no benefits; they did not even know aboutHenrietta’s major contribution to humankind. Her family fi-nally found out about her cells when they were contacted inthe 1970s to participate in a follow-up study investigating thegenetic fates of her descendants. The story of Mrs. Lacks notonly highlights the unethical practice of doing research in-volving human subjects without their informed consent andthe intersection of race, poverty, and vulnerability but it alsoraises important questions relative to biobank storage and datasharing from which profitable products may be derived.

In 2008, a state-funded collaborative research effort calledthe Wisconsin Genomics Initiative (WGI) brought togetherthe Marshfield Clinic, Medical College of Wisconsin,

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University of Wisconsin—Madison School of Medicine andPublic Health, and University of Wisconsin—MilwaukeeCollege of Nursing to facilitate biobanking in Wisconsin anddata sharing among genomics researchers in the state. Thebiobank that was developed has few (if any) data fromracial/ethnic minorities; no African Americans from the met-ropolitan areas of Wisconsin have contributed to the geneticdatabase and bio-repository. Enhancing the diversity pool ofthis biobank, inclusive of African Americans—the largestminority population in the state, is important as the scienceis advanced. The current study is an outgrowth of WGIscientific activities and is supported by the Initiative.

Methods

This report is about the first phase in a larger, mixed-methods community-based participatory research studyabout African Americans’ perspectives on and involvementin genetics and genomics research. We engaged communityleaders in first phase focus groups because of their knowl-edge of and influence in the African American community.From these findings, we designed the second phase of thestudy to understand the perspectives of community leaders’constituencies. From the findings of phases 1 and 2 and inconjunction with the community leaders, we constructed asurvey that was administered to 212 members of theAfrican American community.

Recognizing that individuals of African descent do notcomprise one monolithic population and valuing the diver-sity among those whose geographic heritage is sub-SaharanAfrica, we also engaged African Immigrants in a separate butparallel three-phased study to meet the same specific aims.Results from phase 1 with the African immigrants have beenpublished and are not reported in this manuscript (Buseh etal. 2012).

In the first phase of the study with African Americans,focus groups allowed us to explore and understand keycommunity leaders’ perspectives on genetic and genomicstudies while probing further into those factors that wouldfacilitate or obstruct participation of urban AfricanAmericans in biobanks and other genetics initiatives. Inpartnership with the Black Health Coalition of Wisconsin,a highly respected nonprofit community-based organiza-tion (CBO) that addresses health issues and advocacy needsof African Americans, a purposive sample of 21 AfricanAmerican community leaders (e.g., executive directors ofcommunity organizations, prominent community activists,highly regarded educators) were recruited to participate infour focus groups attended by six, five, five, and fiveparticipants, respectively. This sample size and group sizeare adequate for exploratory focus group studies (Kruegerand Casey 2009).

Focus groups of approximately 2 h duration were held in theevening hours in a conference room at the university. Theywere moderated by the study’s principal investigator, anAfrican-American, PhD-prepared investigator who has collab-orated with the African American and African Immigrant com-munities on prior participatory projects. Upon receipt of writteninformed consent, each focus group participant completed ashort sociodemographic information sheet. A semi-structuredfocus group guide, developed in conjunction with communitymembers, was used to elicit discussion about perspectives ongenetics and genomics research, facilitators and barriers toparticipation in such studies, and ideas about how to attractand sustain engagement of African Americans in biobanks andother genetics initiatives. All focus groups were digitallyrecorded and transcribed verbatim by an African Americanowned commercial transcription service. All procedures wereapproved by the University Institutional Review Board.

Transcriptions were imported into NVivo 9.0, a qualitativeanalysis software program that assisted us in data management(© QSR International 2013). Thematic analysis using continu-ous comparison was employed guided by Braun and Clarke(2006). Four members of the research team did initial indepen-dent analyses, then met to discuss and debrief to ensure con-sensus and consistency in interpretations. Inter-rater reliabilitywas established in this way at several points in the process ofanalysis, enhancing the validity of findings. Preliminary find-ings were presented and discussed at a community forumorganized by the partnering CBO, and their feedback wasincorporated into the results presented here.

Results

Characteristics of focus group participants

A total of 21 African American community leaders partici-pated in the phase 1 study. They ranged in age from 29 to73 years; the mean was 56.8 years (SD=10.65). Participantsin these focus groups were highly educated; 19 % hadcompleted a 4-year college degree, and 38 % had completeda graduate degree. Eighty-one percent were females. Themedian income category was $60,000–69,999. In regard tomarital status, 35 % were married, 15 % were single, 40 %were divorced, and 10 % were widowed.

Themes emerging from the focus groups

Broad themes emerging from analysis of the focus grouptranscripts were: (a) pervasive skepticism about biomedicalresearch, (b) troubling nature of genomics research, and (c)conditions for engagement of African American communi-ties in biobanks and other genetics initiatives. In the sectionsthat follow, these broad themes and their sub-themes are

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presented with excerpts from focus group discussions assubstantiation.

Pervasive skepticism about biomedical research

According to these community leaders, African Americansas a whole are deeply skeptical about participating in bio-medical research of any kind. Well-known abuses of AfricanAmericans at the hands of researchers’ generations ago arestill very much alive in the African American consciousness.More recent local history of researchers’ less than honorabledealings with the African American community reinforcesthe distrust. To add to the controversy surrounding partici-pation in studies, African Americans need only look aroundthem to see disparities in the prevalence and burden ofdisease. They see increased morbidity and mortality in theircommunity even as medical discoveries seem to promiseother Americans opportunities for longer and healthier lives.One participant suggested that biomedical research literallybrings forth a “visceral response” in African Americans.Another insisted, “The trust has been so damaged.”

Legacy of Tuskegee and Henrietta lacks The notoriousTuskegee Study of Untreated Syphilis set the “precedent”justifying African Americans’ unwillingness to exposethemselves to danger in biomedical research. In every focusgroup, participants brought up the legacy of this study:

The syphilis study in the 1940’s; a lot of people thinkabout that, the whole thing they did with syphilis. And,the men didn’t have a clue. That leaves a bad taste inour mouths from way back in history, makes us leery ofresearch. It is difficult to forget.Fear is what comes to mind when I hear the wordresearch. The first thing I think of is the TuskegeeExperiment. What are you going to do to us again?Most Black people say, ‘You are not using my body forno testing because ain’t no telling what I’ll end up with.I might not live to see the research over.’

The more recent revelations about circumstances sur-rounding HeLa cells rekindled angst and anger in theAfrican American community in relation to clandestine hu-man subject research. Without permission, recompense, oracknowledgement, the human tissue of one individual wasused in medical experimentation over many decades to glob-al effect, spawning countless medical discoveries, and gen-erating untold corporate profits. Meanwhile, neither the do-nor nor her family knew of the human tissue contribution, orthe uses to which it was put:

And, who’s the lady they took the cells out of, and shedidn’t even know it? Henrietta Lacks. They took cellsand have been using them for how many years. She

didn’t know it, nor did her family. And they are justnow finding out, while for decades medicine made a lotof money. I’m not opposed to helping people, but youhave got to get my permission to use what I havedonated. You can’t be sneaking around with it.

What the popular book (Skloot 2010) and news coverageabout it made widely known was that the unwitting donorwas an African American woman, Henrietta Lacks, whosechildren have lived in poverty, dealing with chronic illnessesand lacking health insurance, while her cells have generatedcorporate profits over six decades. Participants indicated thatlearning about her case redoubled their distrust of medicalresearch:

Henrietta Lacks didn’t get a dime. They used thiswoman for 50 or 60 years for different stuff, makingmillions of dollars off her cells. And, all along, thefamily couldn’t even afford health insurance.

Suspicion was reinforced, as was resistance:

There is always some mess-up in research. It doesn’tturn out right for us. It is against us. You really getangry because of the way they did things to our people.

Local history of being taken advantage of by researchersAgainst the backdrop of infamous events like the TuskegeeSyphilis Study and the Henrietta Lacks case, participantsdescribed a local history of ill feelings about researcherswho come into the African American community to recruitstudy subjects. As community leaders, they were in aposition to know about biomedical researchers coming intothe community looking to recruit African American sub-jects. In the focus groups, they referred to a number ofstudies done over the years in their city, recounting theproblems they had observed: (a) African American com-munity leaders were invited into the research process only“after the fact” when decisions about focus, design, andoutcomes had already been made; (b) community leaderswere used merely as “entry points” to the “bodies” neededto do the research; (c) researchers neglected to come backto participating communities with the products of theirinvestigations; and (d) research institutions failed to offeradequate resources and credit to the communities thatmake their studies possible.

A lot of times the ones doing the research are disre-spectful to the community. Decisions are alreadymade before they bring the community to the table.They leave the community out of everything until itis time to implement.The problem is that so much research gets started in theAfrican American community, and then it stops and wenever see them again. And, there we are, left with nothing.

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This happened for real—researchers come knocking onmy door and they say, ‘You’re African American. Youknow other African Americans. We need them for ourresearch.’ They tell me they have gotten 2 million dollarsto do a project, and they haven’t offered my organization50 cents for a cup of coffee. We are just supposed to bevolunteers.

Moreover, participants believed researchers too callouslyregarded African Americans as advantageous targets forexperimentation:

We are guinea pigs. Folks are always experimentingwith something, and then they prescribe it to us.

They were aware of the National Institutes of Health Revi-talization Act of 1993 mandating the inclusion of women andminorities as subjects in clinical research, yet suspected itwas the letter of the law that brought most researchers to theircommunity, rather than genuine concern for the health andwell-being of African Americans:

The NIH is saying now to researchers, ‘We are notgoing to give you money unless you get more people ofcolor involved in your study.’ That is what is going on,not a real caring about things that impact our lives.

Unabated health disparities Persistent health disparities inthe African American population further engendered doubtand distrust of biomedical research. Participants perceivedlimited efforts by leaders in scientific and clinical arenasto understand the reasons behind disproportionate illhealth among African Americans. They believed there isno health problem that does not adversely affect AfricanAmericans, yet the social determinants of health are beingignored.

Things that are associated with disease among theAfrican American population are taken for granted.Yeah, they have high incidences of HIV. They havehigh incidences of diabetes and high blood pressure.And, no real effort to understand why that is and how itcan be changed. What about where they live? Whatabout people’s health care being tied to jobs and theyare unemployed? I know how it is to be without healthinsurance.

Participants testified to a complex, poorly integrated, andsometimes discriminatory US health care system; and insuf-ficient efforts to make it possible for members of theircommunities to access timely, high quality treatment:

Look at the disparity in health care in our community.There need to be policy efforts to do something, notjust for today but longstanding, that has a future andwill truly do good for the community.

Such experiences, they pointed out, make people lessinclined to react favorably to the medical profession overall:

I don’t trust those doctors just because they are doctors.They are supposed to be nurturing, but they make youfeel like you don’t know anything. They cut you off.They dismiss what you say is going on in your body.They see somebody for 5 minutes and see no need for aconversation.

They made the link between unabated health disparitiesand lack of research participation by African Americans:

There is total turmoil in the central city—homelessness,unemployment, AIDS. Our central city is ranked worstin the country for jobs. We’re suffering from too manythings. Health is not the only issue, besides we don’thave health care anyway. Are we going to get testedgenetically? We don’t even think about it. I don’t needanother issue on my plate. I got to try to feed my kids.

Troubling nature of genomics research

When asked to consider genomics research in particular,these African American community leaders were torn be-tween their fears and their hopes. Invasion of privacy wasone of their concerns. They also worried that genetic infor-mation could be used with injurious intent. At the same time,they imagined discoveries that could improve the health oftheir community.

Intrusion into private affairs The necessity of divulgingpersonal and family health histories in genomics studies feltintrusive. Participants believed the documentation of privateaffairs, like whether there was mental illness in the family,could be an obstacle for African Americans, perhaps more sothan for other populations. They pointed out that keepingprivate sensitive details about oneself and one’s family hadalways served a protective function against oppression:

That old adage continues generation after genera-tion—Don’t hang your dirty laundry in public. You justdon’t go out there and tell people that someone in yourfamily is mentally ill or has some other disease. You don’ttalk about if someone is sick.Whatever happens in the house stays in the house. Togive out your family history is like prying open a canthat has been sealed for a hundred years.

Using data for harm Participants argued that genomic datacould be manipulated for evil or for good. As one said,“Because other studies have been done against us, our fearis—will the data be in the right hands?” Ever mindful of the

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deplorable history of racism in the USA, these communityleaders expressed seriousmisgivings about uses to which geneticmaterials from African Americans might be put. They literallydiscussed among themselves whether genomic science would beemployed to annihilate their community:

Genetics—you can improve something or you candestroy something. If there is a genetic code and youwanted to alter it, all you’ve got to do is study geneticsand you can eliminate a whole race.The government entity that is in charge of the researchdoes what they want to do with the data. That’s whatI’d be afraid of. Who’s in government and what aretheir attitudes toward ethnic minorities? Results couldbe used in a negative way for racism and discrimina-tion against our people. I fear that this kind of geneticswork could be used to try to annihilate us.

They were also concerned about ramifications for indi-viduals whose DNAwould be “captured in a database some-where.” Would this identifying information be used to denyrights and privileges? Would a new level of surreptitioussurveillance be made possible?

Our DNA is like our Social Security number. If they haveour DNA, they can know everything about us. And theycan use that however they want, including tracking you.The criminal justice system gets your DNA and all of asudden they got a match to you. I distrust that systembecause genetics could be misused unless there is aprotected process to make sure they don’t get informa-tion from my research specimen.

Possible solutions for succeeding generations Despite theirtrepidations, participants were open to learning about geno-mics science and how it could facilitate personalized medi-cine and more targeted prevention and treatment of disease.They could envisage genomic solutions to health problemsfor future generations of African Americans and realized theimportance of research participation now to make that hap-pen for their community:

An omission like not getting Blacks involved in genet-ics research; that could cause harm to future genera-tions in our families.There would be advantages to genetics research in theAfrican American community if we could find outinformation about family history and genetics for in-dividuals and they could be advised in areas where theyare vulnerable.

They were hopeful:

Genetics studies should be welcomed if there is a way tofind a cure for diabetes, high blood pressure, sickle cell

anemia, asthma, breast cancer, Alzheimer’s—things thataffect African Americans.

Conditions for engagement of African Americancommunities in biobanks and other genetics initiatives

These community leaders stressed that in order for scientistsand academic institutions to get African Americans to par-ticipate in genomic studies, certain conditions for engagingthe community must be fulfilled. In their discussions witheach other, they stipulated the minimum requirements: re-spect for the community, authentic collaboration, bidirec-tional education, transparency and prerogative, and mean-ingful benefits and remuneration.

Respect for the African American community In all thefocus groups, participants kept returning to the issue ofhaving to struggle in a system that still does not respectthem—does not know and value their history, wisdom,skills, or credentials. They stressed that redress was es-sential if researchers ever hoped to make inroads in theAfrican American community:

It is going to take a long-term process to engage theAfrican American community in genetics research. Wehave been used and not given information for so long;you can’t just tell people to get over it.You have to be respectful of the African Americancommunity. Be patient with the African Americancommunity. Recognize we have concerns based uponhistorical evidence of research abuse of AfricanAmericans.We have to be treated with decency and respect. As arace of people we have been demeaned for hundreds ofyears. We need to be acknowledged for what we give tothe world by being in research. In Henrietta Lacks wesee somebody who gave something to the world andwas never acknowledged.When you go into our neighborhoods you have to berespectful. If the research project gains public visibili-ty; then there should be visibility for the community aswell, not just the university. Any project should be ajoint effort with equal respect. Don’t make the com-munity invisible after you get your data.

Authentic community collaboration Tying respect to collab-oration, one participant said, “When universities do researchin the community, they take all the credit. It should be a jointeffort with equal respect.” Because so much negativity hadaccrued in African Americans’ dealings with the health caresystem and with academia, participants contended that

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relationship mending was in order before trying to engagemembers of their community in genomics research:

As African Americans, our attitude toward the health-care system and medical research in general, is stillsullied by the reverberations of racism and the discrim-ination that continues today. Unless there are funda-mental relationships built, there will be no successfulgenetic projects.

Time, investment, and sustained presence in the commu-nity were prerequisite to engaging African Americans inresearch partnerships. Community leaders and their constit-uencies had to be able to trust those who would probe intotheir genetic makeup and family background:

Anybody who wants to do research on us needs to be inthe community before you come talking about doingresearch. We have to see you regularly to believe thatwe can trust you to advocate for our issues. We have toknow you, know that you are good people. We have toknow that you will not misrepresent us.

In any kind of partnership, they had to be able to seethemselves reflected in the makeup of the research team.But they were not talking about token positions filled byAfrican American community members. Rather, they weresuggesting the need for African Americans in research lead-ership roles that bring with them legitimate funding anddecision-making powers:

It is important that you have some of us from thecommunity doing the research, asking the questions,participating in all of it. We need to be more than thesubjects of your research.Who is better to understand us than us? I would love tosee people of color study people of color. It is alwaysput in other people’s hands to study us, and then theybecome experts on what is good for us.

As opposed to the lack of collaboration they sensed in pastdealings with researchers who approached them as communityleaders only after research projects were already mapped outand data collection was underway, participants wanted authen-tic collaboration from the start. They wished to have meaning-ful influence in setting research foci and goals, planningmethods, and carrying out “checks and balances” on the con-duct of studies. And they wanted research to come full circlebringing new information and solutions back to the community:

The follow-through is important. The findings have tobe translated into what we can do in our daily lives toimprove our health.

Bidirectional education African American community lea-ders said that education in preparation for involvement in

genomics research needed to be bidirectional. While theywere clear that researchers are the biomedical experts withthe knowledge about genetics, genomics, and personalizedmedicine, they also insisted that African Americans havemuch to teach would-be researchers about how to engagewith community members and how to recognize the fullmeasure of their intellectual grasp, abilities, and resilience:

Academia has its knowledge base. So does the community.Before you deal with involving any subjects in your study,let’s dialogue about how we are going to communicatewith each other—academia and community.If I’m part of your research, and I start to ask youquestions just like you are asking me questions, itshouldn’t be one-way. You will be surprised how muchthe community knows.We are not stupid. Don’t take usfor granted.It is a matter of building capacity on both sides. Thecommunity lets academia know how to act when youare in our community, not like you are above us.

Participants offered recommendations about educationalcontent and delivery to ensure that African Americans wouldbe informed participants and consumers in the genomicsenterprise. First of all, they called for general consciousnessraising and basic education about the field of genetics andgenomics:

What is needed is Genetics 101 for everyone in thecommunity at places where people are—in barbershops,churches, community centers, block club meetings.

Second, they suggested it was important to consider whowould be best suited to teach:

Have African Americans doing the educating. If thepeople delivering the message don’t look like me, Iwonder how they really can know my needs.

Third, they encouraged use of a full range of educationalmodalities:

Use billboards, radio stations, local papers, rap groups.Put it out there through music. Go to churches andschools. Make it visual. Put your picture up in thebuses. We are a visual people. You need a catch phraselike, ‘Get to Know Your Genes.’ And, there is going tohave to be some face-to-face conversation.

They emphasized the multiplicative nature of community-based education:

Once each of us learns something, we will informothers, and that’s how you get the message out.

Further, participants advised that not only must theAfrican American community be taught to understand the

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potential of genomic science; it must be taught to appreciatethe risks. Specific to risks, they voiced a number of questionsabout genetic repositories, research protocols, and protectionof human subjects:

Let us know exactly what biobanks are, and what theywill do with our DNA. Who will take our deposits out?What will they use them for? Will they get our permis-sion? How much money will they make?Maybe I agree to let you keep my sample right now, butwhat if I have a different mindset 10 or 20 years downthe line? Do those people still have my DNA?What if Idon’t agree with what they are doing?

Transparency and prerogative The details about biobankingthese African American community leaders wanted to learnabout as part of bidirectional education between academiaand community illustrate the transparency they were seek-ing. Participants stressed that in order for them to participatein genomic research and endorse such studies to otherAfrican Americans, there would have to be openness, com-munication, and accountability in all procedures:

My participation would be based on who is doing thestudy and what prompted that person to look into thisgenetic topic.What is the purpose of the study? Who is going to getthe results?I want to know what organization would be funding it;who would have privileges to the information; and howyou are going to disseminate results.

In addition to transparency, they wanted prerogative aboutuses of their genetic materials:

I want to know when my genetic materials are beingused. I want to know what you are using them for eachtime you dip into that biobank.If they decide to use my DNA for something other thanwhat I signed for, then they have to tell me. I want to beable to read the information and make the decisionwhether I would like to participate in that new phaseof study or not.If it is an insurance company doing the research, then Iwould not give permission for my DNA to be used.Take the insurance industry totally out of it if you wantto do genetic research in our communities.If I don’t trust, or I don’t agree with what somebodyintends to study, I need to be able to say, ‘No, don’t usemy specimen.’We have to have some veto power. Thereis no guarantee that all scientists are good of heart.

These terms stipulated by the African Americans inthis study go to the heart of current ethical dilemmas inthe field.

Meaningful benefits and remuneration The final conditionfor engagement in genomics research discussed by partici-pants was meaningful benefits and remuneration. There hadto be foreseeable benefits for the African American popula-tion and a protocol for sharing profits and discoveries gen-erated from use of individuals’ genetic donations. Again,participants’ concerns are in line with questions being raisedin the literature about how this sea change in medical scienceis to be ethically transited. About benefits, they said thingslike:

I want to know how any particular study relates toBlack people. That would be extremely important tome. Is it geared toward curing diseases that impact usthe most?The research has to be for the better good of ourfamilies, as well as the community. I want to knowhow are my children, and grandchildren, and childrenafter that going to benefit from the research. In BlackAmerican culture, seven generations down is how welook at it.If it is a matter of saving African American lives, nowor in the next generation, that would be somethingworth depositing my DNA for.

About remuneration, they broached the topic of proprietarycontrol:

Do my deposits to the biobank pay dividends? Re-searchers get the information they want and they getour body specimens, but we get nothing in return?That’s not fair. You got to give something to folkstaking part in these studies.You read about these research companies making mil-lions of dollars. The educated donor of genetic materialwill want to know what monetary incentive there is.There should be a monetary benefit in the long-term ifsomething evolves from that genetic material.If out of something genetic I have donated they find acure for a disease—at that point, my family membersshould have direct financial benefit from that, which isprobably what should have happened with the Lacksfamily.

Furthermore, they talked about fair distribution ofresearch outputs. They wanted assurance that any pre-vention or treatment innovations developed from geno-mic research to which African American communitiescontributed would be made accessible and affordable tothose same communities.

Individual donors, too, they believed should be apprisedof personal genetic information, informed about any action-able findings, and assured return of results that might helpthem reduce risk factors and/or obtain early diagnosis andtreatment for an identified heritable condition:

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If you find something in my genetics that needs to beaddressed, will the services be made available to me?

Discussion

In genomics, there is the promise of prevention and tailoredtreatment of chronic illness; paradoxically, African Americans,who bear a disproportionate burden of chronic illness, par-ticipate at low rates. To better understand the lack of partic-ipation, we went to leaders in the African American com-munity in one US Midwest city to get their views.According to our findings, historical injustices in the con-duct of biomedical research lie at the root of enduringsuspicions among members of the African American com-munity. While there was an appreciation for the knowledgeto be gained through genetics and genomics research, atti-tudes about research involving human subjects were sulliedby reverberations of racism and exploitation. Lack of con-trol over genetic samples once donated raised fears abouthow DNA research might be used to stigmatize and evenannihilate. Further, connections between genomics and fam-ily history made research in this area immediately personal,pitting intrusion into private affairs against possible solu-tions for succeeding generations.

Pervasive skepticism about biomedical research, lack oftrust in the health care system, and distress about worseninghealth disparities characterized discussions about geneticsamong African American community leaders in this study.Like Corbie-Smith et al. (1999) 15 years before, we foundthat African Americans were worried that geneticists aremotivated by money, status, and prestige, rather than bywanting to positively affect the health of African Americans.

The Tuskegee Untreated Syphilis Study and the HenriettaLacks case were particularly influential in the responsibilityparticipants felt to protect their community from harm anddisadvantage. Evidence that the tragedy of Tuskegee lives ongeneration to generation to dissuade research participation byAfrican Americans (Corbie-Smith et al. 1999; Freimuth et al.2001; Shavers et al. 2000) reinforces what Jones (1992) in thebook “Bad Blood: The Tuskegee Syphilis Experiment”claimed in his unparalleled history, “No scientific experimentinflicted more damage on the collective psyche of blackAmericans than the Tuskegee Study” (p. 38).

In addition, ethical implications of the Henrietta Lacks casewere emphasized by participants in this study. InMarch, 2013,new headlines about scientific behavior in the Lacks caseseemed to verify participants’ suspicions. The successful se-quencing of the HeLa genome started a veritable firestormwhen genetic information about Mrs. Lacks and her descen-dants was released to the public, again without their consent;

calling into question whether privacy and anonymity can everbe promised in genomics research (Skloot 2013).

African American community leaders in this study alsoattributed their caution about genetics research to prior vic-timization by “helicopter research” (Hiratsuka et al. 2012),wherein academic researchers figuratively drop into minor-ity communities, hover there to collect data, and thenleave—not to be heard from again. Despite their trepidations,however, participants held out hope for personalized medi-cine and the health benefits it might bring to their people;they wanted African Americans to have a “seat at the table.”What they envisioned was a way forward for a participatorygenomics science that stipulated basic respect for the AfricanAmerican community, authentic collaboration, bidirectionaleducation, transparency and prerogative, and meaningfulbenefits and remuneration.

The story of African Americans’ mistrust of health careinstitutions and biomedical research has been told in manystudies (e.g., Hall et al. 2001; Musa et al. 2009; Shoff andYang 2012; White 2005). Their specific mistrust of humangenetics research is only more recently becoming apparent(Bonham et al. 2009; Bussey-Jones et al. 2010; McDonaldet al. 2012; Skinner et al. 2008). What researchers have foundis that African Americans tend to view genetic screening aseugenic in motivation and harmful to society (Beeson andDuster 2002), and compared to European Americans, they areless optimistic about genetic testing (Achter et al. 2005). Theyare generally opposed to commercial entities like insurance andpharmaceutical companies having a hand in genetics research(Halverson and Ross 2012). Countering this line of research,results of a genetic study of nicotine dependence employing alarge, population-based sample suggested that eligible AfricanAmericans are as willing to participate in genetic studies astheir European American counterparts—if they can be reached(Hartz et al. 2011). According to these researchers, AfricanAmerican under-representation in genetics/genomics researchis explained in population-based studies by difficulty locatingand contacting them in the community and in clinical trials bytheir lesser access to health care.

Notwithstanding the importance of pursuing adequate re-cruitment strategies to reach African Americans, we agreewith those researchers who argue that there are complex,historically based reasons for lower rates of genetics researchparticipation by African Americans. Findings of this studyprovide context and insight into how African Americans haveformed their attitudes about genetics/genomics research andwhat actions it might take by researchers and research institu-tions to fully engage them in genetics initiatives. Similar tofindings from Lemke et al. (2012), these findings emphasizethe priority that African Americans place on respect for theircommunity and their wish for equitable access to any newtreatments accrued from research using stored tissue samplesand health information they have contributed.

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Participants in our study discussed ethical issues that go tothe heart of current debates about biobanks: transparency,confidentiality, ownership and control of human specimens,participant autonomy and right to withdraw, remunerationfor commercial successes, and availability of affordable per-sonalized medicine for African Americans. These same con-cerns are being voiced by the broader public when thequestion of DNA biobanking is raised and by biobank par-ticipants in other ethnic/racial minority groups such asAlaskan Natives (Hiratsuka et al. 2012). While searchingfor pragmatic solutions to these dilemmas that will improveoutcomes for everyone, society must not forget the sciencethat was developed at the expense of marginalized popula-tions (Lederer 2003, 2005) as this has major implications forthe advancement of genetics/genomics.

What many biobanks are currently doing is broad consent.What is “transparent” about broad consent is the lack ofspecificity and participants’ lack of choice over the futureuse of their biologic contributions (Scott et al. 2012)—notthe kind of transparency participants in this study werelooking for. Beyond this sample, members of the public, ingeneral, have been requesting a more “informed” consentprocess for genomics research and are expressing oppositionto the patenting and commercialization of genetic discover-ies that may decrease access to genetic services (Caulfieldet al. 2003; Haddow et al. 2007).

To address ethical questions, some biobanks have establishedcommunity advisory boards to serve as conduits between scien-tists and the community (Terry et al. 2012); others have installedan additional layer of ethics oversight beyond InstitutionalReviewBoards to protect participants in human genetic research(Haddow et al. 2007). Still other ideas being discussed are publicownership of biobanks, profit payoffs to communities, andmechanisms to bring clinically significant outcomes back tobiobank donors (Scott et al. 2012). Common practices aredeveloping as biobanks grow, but there is little consensus todate about standardized guidelines (Caulfield 2011), whichleaves stakeholders like the African American community at aloss in making decisions about participation.

The challenges and poor outcomes from public healthinterventions among ethnic minorities have in part beenattributed to the lack of meaningful community engagementin the planning, implementation, and evaluation of suchprograms (Guta et al. 2013). A more sustained engagementwith why Tuskegee and HeLa have taken on such symbolicpower, despite the widespread existence of other racializedinjustices, remains a possibility for future analysis. Likewise,it would be worth pursuing an examination of what AfricanAmerican skepticism may have to offer the more generalcritique of both personalized medicine and community en-gagement in health services research.

Limitations of the current study must be acknowledged. Theresearch was sited in one city, leaving unanswered questions

about how African American leaders from communities acrossthe USA would respond to inquiries about participation inbiobanks and other genetics initiatives. However, involvingcommunity leaders in dialogue about genomics science as a firststep in engaging African Americans may be a good model forhuman genetics initiatives in other places. The small purposivesample limits generalizability, and the focus group design doesnot lend itself to measurement of attitudes or behaviors in thepopulation. The fact that the principal investigator is an AfricanAmerican may have increased the candor with which partici-pants expressed their sentiments (Center for Assessment andPolicy Development 2005). The use of an African Americanowned transcription service hopefully decreased error in com-mitting spoken word to written text and demonstrated our inten-tion to create amoremeaningful and lasting relationship with thecommunity. This type of decision we believe may be an impor-tant point to consider in the design of future research involvingAfrican Americans and other minorities. Although the findingscannot be taken to represent all African Americans, the nuanceddescriptions participants offered may be transferable to othersimilarly situated communities (Stevens 1996).

Conclusion

From insights gained in this study, we offer four recommen-dations. First, a comprehensive genomics research agendamust not detract from efforts to eliminate structural determi-nants of health disparities (Khoury et al. 2012). The scienceof discovery and the science of translation in the field mustbe accomplished in concert with the examination of struc-tural disadvantages that drive disparities in health, nutrition,education, employment and income, housing, and exposureto environmental toxins and occupational hazards (Angel2011; Bliss 2011; Martinez et al. 2011; Thomas and Quinn2008). Second, it is both essential and urgent that scientistsforge partnerships with African American communities tomap genomics research priorities, design policies for theethical conduct of this emerging science, and guaranteeequitable distribution of its discoveries. Reaching the fullpotential of a human genome revolution to advance knowl-edge about gene–environment interactions is dependent onongoing cooperation between biomedical scientists, clini-cians, and the public whom scientists are trying to reach(O’Daniel et al. 2012; Royal and Dunston 2004). Third, thekey to building trust and overcoming African Americans’trepidation and resistance to participation in biobanks andother genetics initiatives is to engage early and persistentlywith the community (O’Daniel et al. 2012; Terry et al. 2012).Grassroots community partnerships based on transparencyand mutual respect must be operative before the design stageof any research project through implementation and utiliza-tion of results. Fourth, local African American community

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leaders are gatekeepers and guardians who should not bebypassed in capacity building for genetics research in theAfrican American population; they can be the very fulcrumon which bi-directional education between researchers andcommunity members rests.

Acknowledgments Funding for this research was made possiblethrough a grant from Wisconsin Genomics Initiative and the Universityof Wisconsin—Milwaukee Graduate School, grant number 133PRJ32GR.The authors gratefully acknowledge the support from the State of Wiscon-sin through the Wisconsin Genomics Initiative. This research is part of acommunity-based participatory project on genetics and genomics betweenthe University of Wisconsin—Milwaukee College of Nursing and theBlack Health Coalition of Wisconsin. We would like to extend our appre-ciation to Dr. Patricia McManus, Executive Director of the Black HealthCoalition of Wisconsin for making this partnership with UWM possible.We would also like to extend our thanks and appreciations to all AfricanAmerican leaders who took time off their busy schedules to share theirvoices and ideas during the focus group discussions.

Declaration and statement of human rights and ethical standardBecause this study involved human subjects, it was necessary to seekand obtain Institutional Review Board (IRB) approval. Therefore, IRBapproval was sought from the appropriate institution before data werecollected and all persons give their signed informed consent prior toinclusion and participating in the study. All study protocols werereviewed and approved by the University of Wisconsin—MilwaukeeInstitutional Review Board, protocol no. 11.089.

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