Commentary: Teenagers, Research, and Family InvolvementAuthor(s): Carol LevineSource: IRB: Ethics and Human Research, Vol. 3, No. 9 (Nov., 1981), p. 8Published by: The Hastings CenterStable URL: http://www.jstor.org/stable/3563763 .

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MO COMMENTARY:

Teenagers, Research, and Family Involvement by Carol Levine

Roberta Herceg-Baron's case study sensitively describes some special problems IRBs face in reviewing pro- tocols involving minors receiving serv- ices from family planning agencies. The IRB in this case follows the general legal principles outlined by Angela Holder in an earlier issue of IRB'; that is, it does not require parental consent for research when it would not be re- quired for treatment. In the same issue of IRB Robert Veatch raised some ob- jections to that analogy and recom- mended that severe limits be placed on an IRB's right to waive parental per- mission in these cases.2

Let me raise yet another issue. As presented in this case study, the IRB's policies regarding research, like the policies for providing services of most family planning agencies, focus on the adolescent's legal and moral rights to privacy and confidentiality. These pol- icies have developed for ideological and organizational reasons. Yet, as Theodora Ooms, deputy director of the Family Impact Seminar, points out, "Our Constitution asserts the primacy of individuals for legal purposes, but our lives attest to the complex web of interacting dependencies, and policy needs to reflect this fact."3

"Family planning" agencies are, in terms of adolescents at least, really "pregnancy prevention" and "abortion counseling" agencies. Both, I hasten to add, are valuable and needed services. But "family"-at least the adoles- cent's-has until very recently been ig- nored, if not excluded. It is one thing not to mandate parental consent for treatment or research; it is quite an- other to convey the impression, subtly or not so subtly, that the adolescent's family is an adversary. The (question- able) assumption is that if asked for consent, the family would not give it. Given the normal striving for inde- pendence that is part of growing up, and the common (though frequently exaggerated) fears of parental anger if sexual activities are found out, it is no wonder that teenagers are reluctant to tell their parents about contacts with family planning agencies. Yet these same adolescents may be quite am- bivalent about their sexual activities,

Carol Levine is editor of the Hastings Center Re- port and managing editor of IRB: A Review of Human Subjects Research.

the use of contraceptives, and their double deception in concealing both their sex lives and their agency con- tacts. In fact, they may be sending mixed messages to their families: I want you to know what I'm doing but I don't want to tell you about it.

By emphasizing the legal privacy rights of the teenagers, service pro- viders can be depriving these adoles- cents of the kinds of support that often make the difference between con- traceptive success and failure. As Herceg-Baron herself notes in another article, "Only a minority of the first hundred or so adolescents we have in- terviewed report that their sexual ac- tivity is completely clandestine. Conse- quently, the potential for involving family members without violating the teenagers' privacy is great."4 She and her coauthors go on to point out that secrecy is a great barrier to effective use of contraceptives because teen- agers must not only manage the provi- sion of supplies and use of pills or devices on their own but must conceal the side effects. They turn out to be, in the terminology of the trade, "poor contraceptors."

But, even if one accepts that it is bet- ter to have family involvement than not to have it, why should this be of any particular concern to the IRB? After all, the subject is the teenager, not the family. The IRB in this case has ac- cepted that once having waived man- datory parental consent, it has special obligations to protect the welfare of the subjects, who are both young and vul- nerable. A recognition of the benefits of family involvement, where possible, falls in the category of their best inter- ests and welfare. I am not concerned here with parents' rights to be involved (though such a case can be made), but with teenagers' needs for support and advice.

Specifically I suggest that the IRB recommend that investigators seeking consent from teenagers bring up the possibility of consultation with a fam- ily member-if not a parent, then an older sister, an aunt, sister-in-law, someone the adolescent can trust. Such a procedure often occurs in a bio- medical research protocol involving adults; adolescents need family sup- port even more. The initiative must be left to the teenager, but the investiga- tors' support must be clear. This proc-

ess may not only serve to ensure that consent is informed but may also serve as an introduction to more detailed dis- cussions of the adolescent's sexual ac- tivity and any problems she is experi- encing. A small bridge between family and teenager and between an individu- alistic and a family-controlled ap- proach-but an important one.

Although I do not disagree with the IRB's basic conclusions and my sugges- tion for family consultation is simply an additional step in the consent proc- ess, I do find one aspect of the IRB's policy troubling. This IRB sanctions the use of deception, and rather elabo- rate deception at that, in making con- tact for follow-up. Researchers should avoid creating situations that are con- trary to normal ethical standards of everyday life; that obligation is par- ticularly strong when' the subjects are young people. We do not normally de- ceive each other; even less do we impli- cate others in creating deceptions. To involve a health or education profes- sional such- as a school nurse or teacher in a scheme to deceive a teenager's par- ents by receiving clandestine messages (and primarily for the benefit of the re- searcher, no less) is in my view-un- justifiable on two counts. First, it is likely to fail. Teenagers are typically unable to keep secrets or carry out elaborate deceptions. By adding yet an- other element to an already shaky house of cards, the whole structure is

likely to collapse and with more harm- ful results than if the entire enterprise had been known from the start. Sec- ond, and more important, it is a dis- respect to all the persons involved-the parents, the teenager, and the con- federates. These young people are not only learning how to control their own reproductive lives; they are also learn- ing how to manage complicated human relationships. They need guid- ance and ethical examples in both re- spects.

REFERENCES 'Holder, Angela R.: Can teenagers participate in

research without parental consent? IRB: A Review of Human Subjects Research 3 (No. 2): 5-7, February, 1981.

'Veatch, Robert M.: Commentary: Beyond con- sent to treatment. IRB: A Reviewv of Human Subjects Research 3 (No. 2): 7-8, February, 1981.

'Qoms, Theodora: Family involvement, notifi- cation, and responsibility: A personal essay. In Teenage Pregnancy in a Family Context. Ed. by Theodora Ooms. Philadelphia, Temple University Press, 1981, p. 395.

'Furstenberg, Frank R., Jr.; Herceg-Baron, Roberta; and Jemail, Jay: Bringing in the family: Kinship support and contraceptive behavior. In Teenage Pregnancy in a Family Context, p. 367.

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