TABLE 2—

Themes Emerging From the Discussion

Theme	Illustrative Quotations
Research and researchers	Researchers are concerned with benefits to the masses . . . by higher risk to a limited number. It’s about looking at the entire picture and looking outside the box. I have a friend who underwent [a] kidney transplant. . . . There is a bond and a desire to expand scientific knowledge, a core group with common interests to do it for those who are coming after.
Inclusion/broad representativeness	People in research need to look like all the people in the community. Everyone has a different makeup; you can’t lump them in a big pot.
Recruitment	Advertising in the Post means there are assumptions they are buying the Post. There are other people who don’t read it . . . maybe they watch TV . . . speak other languages. You are defining a population, this is problematic. Seniors may not read the Post. You need to go where seniors congregate . . . churches, senior centers.
Trust/distrust	My church, where there are a lot of homeless people and people from the projects . . . they are very suspect of research from . . . before. . . . African Americans from a long history, they don’t trust . . . what has been done to them in the past . . . no trust. Over [the] years, Tuskegee stuff to Vietnam War, world wars . . . Black men are still suffering today. It is hard to trust with a long history . . . even before World War II there was exploitation with slaves . . . history of mistrust. Working with them . . . it takes a long time to build up trust in new people. If they don’t trust you, they are not going to come. It isn’t the money, it is the trust.
Concordance of research team members/familiarity with community	Who will they have confidence in? [Researchers] need to be in the community where they are . . . with people they have faith in . . . have confidence in. In Black culture, we have lived with high blood pressure for many years and they have lived with it so they don’t see the value in experiments. You need people they trust, to know that the people [researchers] have lived your experience . . . that they understand where you’re coming from. We’ll be suspect of exploitation and have to be comfortable and trust people giving the information. If the pastor and session approve, then they would agree [to participate in a research study]. If they know their doctors are working closely with you . . . another trust thing.
Information disclosure	It goes back to communication. The person needs to know everything that is going on. I’m not saying they are going to lie, but not hone in on the risks. But say I have money to do this study and it is going on my [curriculum vitae]; I will focus on benefits, not the risks. What people [scientists] understand, the average person doesn’t understand, they say what they want people to know. They aren’t going to tell you everything, otherwise people wouldn’t do it. What I said in the beginning, be clear in the beginning.
Referrals	If my pastor got up and said do this study—people would do it. Who is doing the referrals? Walls come down when a physician refers. Credibility increases exponentially. If they are referred by their doctor, they won’t feel exploited. . . . If your doctor explains everything and explains about a study at [the National Institutes of Health]. . . .
Advocates	Clearly explain to the patient, let them take time to think about it, and then come back with a sister or mother. It goes back to communication. The person needs to know everything that is going on. You are not alone with an advocate. If they are allowed to bring an advocate, that makes the process better. My father is 74 years old, and I go with him everywhere.
Payment or compensation for research participation	It is reasonable to pay someone for work, if you gain. How much are you gaining? Telling someone their community is gaining is a stretch. How much . . . will it take out of their time? Their cost? Time is money. Money for medicine? What is the value of their time for a person in the study? [People should be reimbursed] fair market value for time . . . value of the study to the researchers. They are getting millions of dollars for research. We are talking about people’s lives. The amount of money is disgusting if [someone is] putting life on the line. . . . Reconcile it. If you know who you want you are paying for a service that costs that much; $25 can look like $100 . . . $100 can look like a million. Worry about if they make the criteria. If you think someone is only doing it for the money, you can make it a challenge and make them come here. Druggies and alcoholics may do it for the money. . . .
Provision of care	If you come and you have high blood pressure, we will give you good care for a year. That says we care about you. Get rid of the money altogether and just give good medicine—give them a year of medical care and follow-up—that’s good care. I like this study because I was told it would be more than $1000 [to pay for treatment] if you have this [disease/condition]. . . . If you have limited access [or] no access, this would fit the bill, especially in African Americans.
Clinical monitoring	Are these people [research participants] being monitored? If their pressure gets worse, are they going to pull them from the study? As long as there are stopping rules. . . . Physiology is different for different groups. . . . Especially the elderly can be on 20 medications affecting each other. I’m not so sure if they come off [their meds]. . . . [They] need close monitoring. You may have people not able to or not competent to take their blood pressure. You’re playing with their lives. Will they take them off their medications?
Poststudy follow-up	But the person with no insurance, where do they go when the study is over? There has to be a responsibility of the researcher to these people when the research is over. Is there a clinic then set up where they can go? They’re concerned: “The research is over . . . where do I go?” How long is this going to last when the study is done? Is the person going to be thrown away? The biggest thing is the follow-up. Social workers, patient advocates. . . . When the study is over, that is when they feel used.
Use of data/anonymity	Data collected in databases can be used against you, [you] can’t get insurance, loans. What is it being used for? How is it being used? Where is the information going? How is personal information [insurance, Social Security number, address] being used? Who is getting this information? The information is going to a database and people can pull it up. Clear exploitation. What are they going to use it [blood samples] for? No way.