Surveying teens about sex: Full disclosure, confidentiality key
Careful attention must be paid to the informed consent process
Behavioral surveys of adolescents always are a delicate proposition, requiring consent from parents as well as assent from the child and asking both to consider the possible implications of participation. Add sex to the mix, and it becomes a potentially volatile brew for IRBs, raising issues of confidentiality, public health, and parent-child tensions. But investigators dedicated to discovering more about the sexual behavior of teens say research can be done if careful attention is paid to informed consent and to the protection of the adolescents’ interviews.
In fact, done properly, the surveys can end up benefiting the children and parents who participate, says Elizabeth Waiters, PhD, associate research scientist for the Prevention Research Center of the Pacific Institute for Research and Evaluation (PIRE) in Berkeley, CA. Her organization recently released results from a survey of more than 800 adolescents regarding their media consumption and sexual behavior.
"One of the good things that came out of the study was that a lot of parents were saying it opened up the lines of communication between themselves and their children, along the lines of sexual activity, in a way that they hadn’t been able to talk to their children before," Waiters reports.
She says the knowledge gained from working with researchers on the sexual behavior survey has helped the organization’s IRB better deal with tough issues in other surveys involving sensitive data.
"[IRB members] actually wanted to use this protocol as a prototype to present to other investigators when they were coming in front of the IRB, because they did such a good job of it," says Waiters, who served on the IRB when the study was reviewed and later joined the research team. "This was one of the first studies our IRB had to deal with of such a really touchy nature."
The largest study to date of adolescents, the National Longitudinal Study of Adolescent Health (Add Health), surveyed seventh through 12th graders across the country over eight years on a variety of topics including drug use, peer pressure, and sexual attitudes and risk behaviors. The surveys included in-home interviews conducted with more than 20,000 students.
The adolescents were asked detailed questions, not just about their sexual activities, but also about the identities of their partners in order to study networks of relationships, says Peter Bearman, PhD, one of the study’s designers and chairman of the department of sociology at Columbia University in New York City. In later stages of the study, participants gave urine and saliva samples to test for sexually transmitted diseases.
Research projects using the data have examined the role of virginity pledges in sexual decision making, the relationship between maternal attitudes and teenage sexual activity, and religion’s influence on teens’ decisions about sex.
Bearman described a complex study design that was intended not only to protect the teen participants from direct disclosure of their responses but also from so-called "deductive disclosure," in which a respondent’s identity could be guessed from the use of known characteristics collected in the data.
Adolescents who participated would answer questions posed to them on a laptop computer to prevent even the interviewer from knowing their responses, a practice also used in the PIRE study. Melina Bersamin, PhD, associate research scientist at the Prevention Research Center and author of the PIRE study, says parents were given a separate, paper-and-pencil interview in a separate room to ensure that they wouldn’t be around the teens while the survey was being administered.
Interviewers for the Add Health study were chosen from outside the survey’s geographical area to avoid accidentally assigning an interviewer to survey someone he or she knew, she says.
The Add Health data were transmitted back and forth between the interviewing organization and a data manager in Canada, stripping away personal data so that the researchers didn’t possess identifying information, even if they were ordered by authorities to produce it.
Bearman says that last safeguard was to prevent a situation such as a "frantic father example," in which a parent might learn of a child’s sexually transmitted disease and attempt to compel the researchers to disclose the names of the child’s sexual partners.
Because researchers would be obligated by law to release information when compelled by the government in a public health situation, Bearman says the critical link in the chain of data identification — a key matching an adolescent’s ID number to a real person — was located outside the United States.
In fact, both PIRE and Add Health survey designers decided early on to avoid asking questions about sexual abuse and other reportable activities, because they would be compelled to immediately disclose them to the authorities.
Waiters says the PIRE questions were carefully worded to avoid soliciting information about illegal activities, including consensual sex between a teen and an adult. "If it did come out in the interviews, parents had to know that that information would have to be divulged," she adds.
Bearman says the Add Health researchers also used a system of describing geographical locations — also important in studying social networks — in a way that made it impossible to identify a particular neighborhood or school involved in the study. And certain data were removed to keep from unintentionally identifying respondents indirectly.
"If you knew somebody was in the study, you could then cross-classify a whole set of characteristics in order to uniquely identify a single individual," he says. "For example, there are only so many girls in the school who are 16 years old who play on the volleyball team who have a certain weight or height, and sometimes, there’s only one."
Add Health’s concern about confidentiality is so keen that researchers who use the restricted data in their own projects must agree to an IRB-approved security plan that includes using standalone computers or other methods to keep data off the Internet or an internal computer network.
At PIRE, an interviewer was fired after her laptop computer, which contained interviews, was stolen, Bersamin and Waiters report. Luckily, there was no identifying information in the data, Bersamin says.
"I remember that started a discussion on the IRB of the safety of monitoring that kind of information," Waiters says. She says the IRB had an information technology expert talk to members about data encryption and other security measures for laptops.
Giving parents the facts
The end result of all of this attention to confidentiality was to reassure both parents and teens that the adolescents’ privacy would be protected, a process that greatly eased recruitment and informed consent, Bearman says.
"Parents didn’t have a problem because they believed in the security system," he says. "And the interviewers didn’t have a problem convincing them because they believed in it, too."
Waiters says the chief concern of the IRB reviewing the PIRE study was that parents understood that the survey their children would fill out included specific questions about sex.
She adds that the IRB asked researchers to rewrite a fact sheet for parents to more explicitly state that fact.
PIRE contracted with a data collection firm to provide them with a database of households that were likely to include adolescent family members. An initial phone call secured the parent’s permission to ask the child if he or she wanted to participate. A formal written consent form was sent to families who agreed.
From the beginning, parents were told they would not have access to their children’s responses, Bersamin says.
She says the consent form explained to parents and teens that the researchers had obtained a Certificate of Confidentiality from the National Institutes of Health (NIH).
The NIH issues the certificates to protect identifiable information from forced disclosure in civil and criminal matters. However, researchers using them still are subject to state public health laws requiring disclosure of communicable diseases, a point that Bearman says made a certificate worthless for Add Health’s purposes.
In the PIRE study, both students and parents received nominal compensation for participating, Waiters says.
She says many of the parents who agreed to allow their children to participate in the PIRE study cited its focus — the relationship between media influences and teen sexual activity.
"When they found out it was a study of the media, of television in particular, most parents were really happy to participate," Waiters recalls. "I know from the focus group interviews, parents had a lot of concerns about the amount of sexuality in television, and really didn’t know what to do about it."
She and Bersamin say another point that reassured parents was a particular feature of the computerized survey, a "skip pattern" that automatically deleted questions from the survey if the respondent didn’t need to see them.
"So, if an adolescent indicates that they’ve never kissed anyone or held hands with anyone or made out with anyone, we’re then not going to ask them questions about sexual intercourse or anal sex or anything like that," Bersamin explains.
Although Add Health did restrict questions about activities such as anal and oral sex to older respondents, Bearman says he thinks there’s too much concern about the potential harm of presenting a teen with such explicit questions. He says adolescents are more sophisticated and knowledgeable about sex than adults think they are.
"If an IRB worried that a 15-year-old could be disturbed by a question about sex, then I would think that they’re not paying attention to the larger culture around them, which is just infused with explicit and inexplicit comments about sex," he says.
Bersamin says she worries that in an effort to protect kids, IRBs are too quick to strike questions that researchers need to ask. For example, she says, in the past, surveys of teens shied away from asking about oral sex.
"And new studies have finally started putting that in questionnaires, and lo and behold, it appears to be more prevalent than sexual intercourse," Bersamin says.
A beneficial’ survey
Bearman notes that the Add Health survey asked a number of questions that he considered far more sensitive and potentially disturbing than ones that involved sexual behavior.
"There were a whole lot of questions about suicidality, about tensions that kids face, feeling lonely, having disrupted family lives," he says. "One of the most sensitive questions in my opinion was, Does your mother love you?’ For a 15-year-old who thinks his mother doesn’t, that’s a more sensitive question."
In the event that a parent or adolescent did experience problems while being surveyed, both studies took pains to make professional help available.
Waiters reports that for the PIRE study, every interviewer was armed with a list of referrals in case issues such as drug use came up during the interviews. All participants also were given a toll-free number to reach the IRB in case they had questions about the study.
For participants in the Add Health study, researchers provided a 24-hour psychiatric help line, Bearman says. "Maybe two or three people used it. It was a useful investment. That’s the kind of thing that IRBs should be asking about. It meant that if anything serious happened, there could be some help around for the kid."
Bearman also contends that IRBs should make an effort to ensure the survey itself is set up in such a way that it can potentially benefit the respondent. Both he and Waiters say students were very enthusiastic about the surveys, approaching interviewers to ask to be included and having parents check back in subsequent years to make sure follow-up surveys were conducted.
"A well-designed survey instrument is fun to fill out because it’s revelatory of the self — the process of filling it out helps them understand their lives," Bearman says. "The bad surveys just take analytic questions from academics’ minds and ask them, without any order, without any sense of the life. It’s a very different experience and much more threatening to the individual, where they just become an object.
"What IRBs can look at is whether this survey is designed to work with the way people’s lives work. Does this instrument do something for the respondent? Because there’s no reason that instruments shouldn’t be beneficial."