“I’m not going to be a guinea pig:” Medical mistrust as a barrier to male contraception for Black American men in Los Angeles, CA

Abstract

Background:

Racial disparities in unintended pregnancy and contraceptive use in the United States are not mediated by access to family planning services alone. Rather, a history of medical mistrust underlies Black Americans’ adoption of new medical technologies, inclusive of contraception. Efforts to develop hormonal male contraceptives need to incorporate Black Americans’ experiences and perspectives so that new contraceptives enable their reproductive goals and promote gender equity.

Study Design:

Working with our community-based partner, Healthy African American Families in Los Angeles, California, we conducted six 60-minute focus group discussions with 39 Black men over age 18, in ongoing heterosexual relationships, to explore attitudes towards and willingness to use hormonal male contraceptives.

Results:

Just over one-third (35%) of respondents reported willingness to use or rely on hormonal male contraceptives. The majority held negative attitudes about hormonal male contraceptives, citing concerns about side effects and safety. Several respondents expressed mistrust of the medical community and medical research, noting that hormonal male contraceptives could be used against Black communities; several expressed unwillingness to trial hormonal male contraceptives without years of testing. However, all groups described scenarios where they would use them despite stated concerns.

Conclusions:

Black men’s hypothetical willingness to use hormonal male contraceptives is limited by medical mistrust, which may be overcome by their concerns about the unreliability of current options or the contraceptive behaviors of female partners. Nevertheless, addressing Black Americans’ history of medical mistreatment and exploitation will be essential for hormonal male contraceptives to positively contribute to Black men’s reproductive options and agency.

Implications:

While the development of reversible, hormonal male contraception intends to fulfill unmet global needs for contraception, the utility of these hormonal male contraceptive methods among Black men living on low incomes in Los Angeles, California cannot be fully realized until developers address and overcome historical and ongoing medical mistrust.

1. Introduction

Racial disparities in unintended pregnancy and contraceptive uptake in the United States (US) persist despite advances in the availability, affordability, and accessibility of contraceptive options [1]. These disparities are particularly pronounced among Black Americans, who according to the 2006–2010 National Survey of Family Growth, reported half the likelihood of using contraception at last intercourse as compared to their white counterparts, even when not wanting more children, and even after adjusting for socioeconomic status and health insurance payor [2]. Differences in contraceptive preferences among Black Americans, particularly with respect to concerns about perceived control and reversibility [3], are linked to preferences for less effective, user-controlled, non-prescription methods (e.g., abstinence, withdrawal, and condoms) [4]. However, these concerns are not simply attributable to unique social circumstances and cultural norms (e.g., preferences for larger family sizes and fatalistic attitudes about pregnancy prevention or contraceptive methods), but rather a history of interactions with a coercive or discriminatory US healthcare system that prompt mistrust in the medical system [5]. Equitable contraceptive development that aims to expand the range of available contraceptive methods, inclusive of novel contraceptives for male users, must partner with Black and underrepresented minority groups to fully address concerns that may influence if and how novel contraceptives are used.

Novel, reversible, coitally-independent hormonal male contraceptives can fill an unmet need for male partner engagement and gender equity in pregnancy prevention. Investigational hormonal male contraceptives demonstrate safety, efficacy, and reversibility in clinical trials [6, 7], and in a US survey of 1500 men, approximately half (49.3%) reported willingness to use a new method of male contraception; only 12.4% reported disapproval. The survey, however, did not assess variations in acceptability by race and/or ethnicity [8]. Variations are expected however, as Black men generally report less knowledge and awareness of contraceptive methods [9], and are reportedly less likely than White men to rely on vasectomy for pregnancy prevention, even when reaching their desired family size [10]. Qualitative research on Black men’s relationships and sexual experiences reveal cases where men could potentially benefit from a male contraceptive of their own. In addition to the confidence that may arise from having control of contraception, they may also prefer hormonal male contraceptives because they may help them avoid instances of reproductive coercion [11], concerns about condom reliability, and concerns about entrapment by their female sexual partner(s) [12]. Nevertheless, Black American men are underrepresented in surveys of male contraceptive acceptability [13] and qualitative male contraceptive acceptability work primarily engages with Black adolescents [14], resulting in findings with limited generalizability.

For Black American men, personal and societal experiences of criminalization, racial discrimination, and disempowerment may magnify mistrust in government-sponsored contraceptive research [15], thereby warranting specific exploration of their hormonal male contraceptive attitudes. We conducted focus group discussions (FGDs) among community-recruited Black men in Los Angeles, California to better understand their attitudes on and willingness to use hormonal male contraceptives, with attention to potential barriers to the diffusion of such innovations in contraception.

2. Methods

We partnered with Healthy African American Families Phase II (HAAF), a community-serving agency in Los Angeles, California, built on the principle of partnership between academia and the community to ensure the ethical and equitable conduct of health outcomes research in under-resourced, minority communities. Partnering with HAAF’s male African American men’s health research coordinator (ALB, a Black male with extensive experience in conducting community discussions on sensitive topics), we recruited Black men over the age of 18 who reported being in heterosexual sexual relationships. We recruited from adjacent neighborhoods using a combination of snowball and convenience sampling, recruiting via direct identification of potential participants by HAAF members, letters and phone calls to community members, community member referrals, and printed advertisements placed at HAAF’s community gathering space. Based on 2010 US Census Data, our recruiting catchment primarily included Black or African-American households (74%) with a median income of $35,000 [16].

We conducted all FGDs in a private conference room within HAAF’s community workspace. The principal investigator (BTN, an Asian-American male obstetrician-gynecologist and male contraceptive investigator in his thirties) and HAAF’s men’s health research coordinator (ALB) conducted the hour-long FGDs. To minimize any perceived power differentials and facilitate open discussion, the principal investigator did not identify himself as a physician, instead introducing himself as a researcher. The coordinator facilitated an informal atmosphere so participants felt comfortable sharing candid, controversial opinions. Given the sensitive nature of discussion topics (e.g., sexual relationships and preferences), all participants provided an alias. The participants gave oral consent for research participation and audio recording.

Prior to starting the FGDs, all participants completed a brief, self-administered survey that included basic demographics, relationship status, reproductive characteristics, and initial opinions on willingness to use hormonal male contraceptives. The structured group discussions followed a script and discussion guide developed in conjunction with HAAF leaders, with questions based on previous male contraceptive acceptability literature, and structured around EM Rogers’ Diffusion of Innovation framework [17]. Discussion domains according to the framework examined: (1) relative advantages and disadvantages of hormonal male contraceptives; (2) compatibility of hormonal male contraceptives with previous contraceptive and pregnancy experiences; (3) perceived complexity of hormonal male contraceptive physiology, access, and consistent use; (4) willingness to participate in male contraceptive trials and willingness to trial newly approved products; and (5) observability or perceived acceptability of hormonal male contraceptives or willingness to be public about its use among peers. Additional probes stemmed from the principal investigator’s clinical experience in contraceptive counseling. All groups started with a description of the intended research, its sensitive topics, and the voluntary nature of their responses. We asked open-ended questions aimed at understanding the participants’ experiences with contraception, involvement in decision-making, and impact of relationships on contraceptive use, with probes aimed at eliciting the participants’ perspectives on male responsibility in family planning. We then provided a brief overview of investigational hormonal male contraceptive options and how they function–pills, injections, and topical gels–before soliciting their perspectives on hormonal male contraceptives in accordance with the framework. HAAF executive committee members reviewed the structure and content of each FGD after each session to ensure comprehension of the questions and improve the investigator’s delivery. We offered participants printed information on contraception and family planning services following their completion of the discussion, as well as a $25 gift card for their time.

We transcribed the recordings through a third party service and analyzed the discussions following a combination of general inductive [18] and thematic content analysis [19]. Using NVIVO 11, 3 research team members (BTN, KMC, JMF) independently coded the transcripts according to broad topics from the discussion guide and then added additional codes observed while coding under each topic, in a process of constant comparative analysis. We coded salient themes emerging from the data and independent of the discussion guide, such as medical mistrust, which they re-applied to previous transcripts. We then combined, compared, and collapsed codes iteratively until reaching consensus. We discussed themes derived from the codes and their representative quotations with HAAF executive committee members to confirm interpretations consistent with community perspectives. We present survey data using simple descriptive statistics. The Lundquist Institute’s Institutional Review Board approved the study as human subjects research.

3. Results

3.1. Quantitative findings

We conducted six FGDs with 39 male participants with a median age of 30 years (Table). Nearly half (46%) of the participants reported not attending college, with 24% still in school. More than half (56%) had children and nearly one-third (32%) reported experiencing an unintended pregnancy; 68% reported desiring more children in the future. Approximately one-third (38% and 35%, respectively) agreed that men should use and that they would personally use hormonal male contraceptives in the close-ended survey; 35% also reported that they would not use hormonal male contraceptives.

Table.

Black male focus group discussion participant characteristics and hormonal male contraceptive attitudes (n = 39; Los Angeles, California, 2017)

		Total
		N (%)
Age	18–24	5 (13.5)
	25–34	17 (46.0)
	35–49	15 (40.5)
Education	< High School	18 (46.2)
	Some College	13 (33.3)
	Completed College+	8 (20.5)
Currently in school	No	29 (76.3)
	Yes	9 (23.7)
Religious Identification	Christian	17 (43.6)
	Catholic	3 (7.7)
	Other	10 (25.6)
	None	9 (23.1)
Number of children	0	17 (43.6)
	1	10 (25.6)
	2	6 (15.4)
	3+	6 (15.4)
More children desired	No	12 (31.6)
	Yes	26 (68.4)
Experienced an unintended pregnancy	No	25 (67.6)
	Yes	12 (32.4)
“Men should use male birth control” (n = 34)a	Disagree or strongly disagree	7 (20.6)
	Not sure	14 (41.2)
	Agree or strongly agree	13 (38.2)
“(My partner and) I would definitely use male birth control.” (n = 34)a	Disagree or strongly disagree	12 (35.3)
	Not sure	10 (29.4)
	Agree or strongly agree	12 (35.3)

^aFor the purposes of this study, participants are informed that “male birth control” refers to hormonal male contraception. Five individuals did not provide responses to these items due to a misunderstanding of survey instructions.

3.2. Qualitative findings

We asked specifically about participants’ hormonal male contraceptive attitudes, noting the salience of negative attitudes across all FGDs, which elicited discussions about medical mistrust. The following sections examine three dimensions of mistrust from the FGDs, starting with how (1) misunderstandings and mistrust of male contraceptives lead to broader discussions of the groups’ perspectives and mistrust of (2) the medical system and/or community, as well as (3) medical research.

3.2.1. Misunderstanding hormonal male contraception

Participants discussed numerous concerns about the safety, reversibility, and side effect profile of hormonal male contraceptives. While some concerns aligned with the facilitator’s explanation of reversible hormonal male contraceptive physiology (e.g., changes in weight or libido), others reflected a priori assumptions or anxieties such as testicular swelling or the development of “women tendencies.” Some men decided categorically that hormonal male contraceptives could be harmful to themselves or their future progeny as follows: “Me personally, I don’t think male birth control is a good idea. I don’t condone of birth control for males because it’s not good for our male body.” Further probing into concerns about potential harms revealed misunderstandings about medications in general, with one man comparing hormonal male contraceptives to narcotics:

It’s like a drug. Well, you said it’s not narcotic, but if it’s a pill, it’s going to be considered a narcotic […] Based on that, pharmaceutical drugs is the number one killer.

(31 years old)

Despite being informed that hormonal male contraceptives are developed with the goal of reversibility, some men remained unconvinced, perseverating on unpredictable and uncontrollable effects:

…to have some drug like this out that can stop sperm cells, shut them down, that’s some hellified power. But in my head, is we getting ready to prepare our bodies to be vessels for something that we may not have control of when it’s time for us to have kids?

(48 years old)

…this pill, it might be good for us to not have kids and all of that. You guys said that it brings back up our sperm count, whatever. Now, that doesn’t mean that because our sperm count come back that our kids might not come out deformed off of these pills, and however they give us this birth control.

(38 years old)

In the above examples, the participants’ initial concerns about drugs and their effects on the body intensified into concerns about possible effects on future fertility. Even further, another man proposed that non-contraceptive benefits might have the unexpected consequence of dependency:

It might feel good. It might be something addictive, we don’t know…You might just be taking it more than just for what it is. We don’t know if it boosts your orgasm up, or we don’t know if it decreases it a little bit, we really don’t.

(Unable to identify from recording)

Then another thing that I do know about hormones is because I know transsexuals take hormone drugs. Once they’re on it, they ain’t supposed to stop taking the pills because it messes up their body […] I’m not saying we sticking on the same exact hormone pill. I don’t know what y’all put up in it, I’m not the scientist. But it is a fact that once the transsexuals start taking the pills they can’t stop taking it.

(30 years old)

3.2.2. Mistrust of the medical community

In the previous section, participants suggested that male contraceptives could not be trusted to be safe, even after explanations given by the group facilitators. One participant explained men’s negative opinions of hormonal male contraceptives, proposing: “I think it has more to deal with [social] trust than you know, the actual [male contraceptive] technology.” This insight prompted queries into medical mistrust, as represented by long-standing negative views of or experiences with medical providers or systems. One example included a participant’s concerns about trusting the needles used for hormonal male contraceptive injections:

I was just saying, people already don’t like shots, taking all these needles, getting shots […] Not all needles are sterile. Doctors’ needles, it don’t matter. Not always sterile, it depends on the chemicals and everything that’s going on. Anything could happen.

(Age not given)

Distrust of doctors and pharmaceutical companies, with reference to race, is evidenced in FGDs where participants raised concerns about the deprioritization of Black community needs, conflating the intentions of hormonal male contraceptive developers with those of former CEO of Turing Pharmaceuticals and convicted felon, Martin Shkreli:

What’s the guy name who had the AIDS pill and jacked up the price? […] The white dude. White dude. […] You guys are going out your way to do this pill. It really lets you know where you guys’ heads is at because it’s other pills that needs to be distributed more so than this here [male contraceptive] pill. This pill is really useless, is what it sounds like, when you got other pill that could really cure AIDS and all this stuff.

(33 years old)

Other participants supported such suspicions, incited by a history of medical initiatives and interventions that they perceived as government-sponsored reproductive coercion.

Back in 2008, that’s when the federal government finally got rid of things like the eugenics project we had when we were selectively sterilizing citizens against their own wishes and even before that, they were doing things where they were not sterilizing men also, but I think they were doing it to women.

(25 years old)

Other participants who raised concerns about non-specific, long-term harms from hormonal male contraceptives further emphasized concerns about the violent, systemic targeting of Black individuals:

Black people, in far as medicine, have gone through a lot of shit, you got to understand this, that people have given us to kill off our people. Other races have not really gone through that. When you come to us with some new pills, some new medicines, we have different concerns. Are you really trying to help us with birth control? Are you trying to kill my people off […] Are you trying to deform my people? Are you trying to stop us from reproduction?

(47 years old)

3.2.3. Mistrust of medical research

We additionally noted mistrust in medicines and the medical community reflected in participants’ concerns about participating in research and lacking a reliable basis for comparison when trialing new drugs: “I’m not taking that, I’m not doing the lotion, I’m not taking no shots just because I’m not going to be a guinea pig neither with this new product, too.”

However, other participants seemed more concerned about the responsible conduct of research by developers, who in their narrow production interests, might overlook harmful drug interactions that might be encountered when marketed and used widely:

What if people find that real interesting and then them two chemicals, because they have never been tested together what and how are they going to react with each other inside your body? […] What’s it going to do to my body? What side effects? What’s going to happen? […] Everybody trying to produce certain pills out to say that they’re helping us, but you’re all putting these pills out at the same time. It’s like, ‘What up? Which one, this one? Take all of them,’ but [we’re] going to be [the ones] out here fucked up.

(Age not given)

Accordingly, participants cited profit interests that might influence researchers and developers to release less than perfect contraceptive methods with longer latency times:

We waited three months, that’s 90 days. […] If you want to think that [some men would wait three months for their contraception to be effective] that would be a cold scam. What if it didn’t work? You a million-dollar man already just within that three months.

(Unable to identify from recording)

Some men additionally expressed concerns about accountability whereby researchers might not be adequately considering the possibility of irreversible effects and damages for which the participant might require, but be unable to obtain, greater care or compensation following participation:

There are so many class-action lawsuits from these new pharmaceuticals coming out with these test trials like you. People come and take them and then the medicine fucks them up and now they’re trying to sue you and your company. Now I got to go through all this shit to sue you in this class-action lawsuit and I don’t get paid but I’m still getting fucked up, or maybe die. […] Your test trial, do you have a medicine that’s going to help build you back up and keep me alive?

(47 years old)

Discussion of hormonal male contraceptives in the context of research incited discussions about the victimization of Black men and vulnerable populations by the medical community. Two FGDs mentioned the Tuskegee Study, with one participant comparing the study to hormonal male contraceptive trial recruitment efforts:

I’m thinking about Tuskegee Institute and how men were infected with the syphilis virus. Right? We ain’t know what was going on. Give me a couple of dollars, you come in. Boom. Next thing you know, they’re doing a big ole’ test on you, right?

(50 years old)

3.2.4. Reconciling mistrust and male contraception

While many participants raised suspicions about hormonal male contraceptives and the intentions of their developers, we neither observed such cynicism universally nor without exception. Notably, the second mention of the Tuskegee study suggested greater confidence in the safety of research, noting the enactment of human subjects’ protections by research review boards.

I’m certain that it won’t come on the market until it’s fully tested and everything. We’re not gonna just say, ‘Okay we’re gonna start selling this tomorrow. We don’t know what it’s gonna do; we hope it don’t hurt nobody.’ They don’t do that anymore since Tuskegee.

(Unable to identify from recording)

If provided with more evidence and assurance about the safety of novel hormonal male contraceptives, some participants reported willingness to tolerate known side effects and acknowledged the potential benefits of men having a contraceptive option of their own:

I think it’s great that the guys have the option as long as the side effects are known and all that good stuff. As long as it doesn’t have any long-term side effects, like I’m trying to have kids and I can’t after that. Or I develop kidney cancer or something […] As long as it’s safe and responsible, I think it’s great that we have a choice. That’s my opinion.

(30 years old)

For some men, the benefits of hormonal male contraceptives became more apparent when contrasted against their mistrust of currently available methods and the contraceptive behaviors of their female partners:

Sometimes you got the females that try to get you caught up […] They’ll play with you. Sometimes. Poke a hole in the condom. Or they’ll stop taking it and they tell you they still taking it. That’s why you got to be in control.

(29 years old)

A lot of people would take it. Inasmuch as we are here [and] we are skeptical, some of our peers, much of our peers, they don’t want a child involved in whatever game they’re playing with girls out there, so it’s going to be their best protection. It’s going to be with them handy.

(34 years old)

Men’s desire to avoid an unplanned pregnancy outweighed their initial hesitancy, though with the caveat that research be completed prior: “After all the research is done and they put it out there in the market, I’m taking the pill. I’m taking the pill cause I ain’t gonna’ put no other babies out there. I’m taking the pill.”

4. Discussion

In this community dialogue among reproductive age, heterosexual, Black American men recruited from a primarily low-income, urban, metropolitan setting, approximately 35% of participants reported willingness to use a new method of hormonal male contraception. Despite the perseverance of medical mistrust across FGDs, their willingness to use novel hormonal male contraceptives did not markedly differ from summarized findings from a review of male contraceptive acceptability research where at least 25% of male respondents reported willingness to use hormonal male contraceptives globally [20].

Our study is one of the few to examine a critical barrier to hormonal male contraceptive uptake among Black American men–medical mistrust. We observed misunderstandings about hormonal male contraceptives and hormonal male contraceptive researchers rooted in their mistrust of new medications, the medical industry, medical doctors, and medical research. Participants’ associations of hormonal male contraceptives with narcotics and addictive drugs are likely fueled by recent media and public health attention to the opioid crisis and its disproportionate impact on minorities living on low incomes [21]. While one participant cited the United States Public Health Services’ “Tuskegee Study” (1932–1972), where nearly 400 African American men did not receive adequate treatment for syphilis [22], as a reason for not trusting medical researchers, reproductive prejudice may persevere in more subtle ways that instigate continued mistrust. For example, Black populations disproportionately undergo subsidized sterilizations [23] and financially disadvantaged Black women are more likely than white women to be recommended long-acting intrauterine contraception [24]. Conspiracy narratives are highlighted in a survey of 500 Black Americans, conducted in 2003, where one-third of participants agreed that minorities are used as “guinea pigs” to test new contraceptive methods and one-half believed that the government withheld data on the safety and side effects of new contraceptives.

We acknowledge Black men’s concerns about exploitation in the context of medical research. As many expressed unwillingness or reticence to participate in hormonal male contraceptive trials, their concerns should compel researchers to ensure Black men’s perspectives are included early, and that research responds to their concerns. Nevertheless, Black Americans should not be categorically assumed to neither desire participation in research nor be hormonal male contraceptive users. Future studies may consider paired surveys on willingness to use or try hormonal male contraceptives in individuals within a dyad to explore the influence of female partners. Additionally, male partners seen at the time of a woman’s abortion, counseling on an unintended pregnancy, or following the delivery of their last child should be surveyed, given that these moments may generate interest in conversations and counseling about their contraceptive involvement, setting the stage for hormonal male contraceptives.

While our findings suggest that Black American men’s interest in hormonal male contraceptives is mitigated by medical mistrust, these findings are derived from qualitative data collected within a specific community–a primarily low-income, urban neighborhood–and thereby lack external validity across socioeconomic and racial or ethnic groups. We do not know the extent to which mistrust is present in the broader US population or among other minority groups who experience disparities in reproductive health and healthcare utilization, (e.g., Latino men living on low incomes). Nevertheless, we intended to examine minority perspectives not encountered in population surveys. As we did not anticipate the pervasiveness of medical mistrust across FGDs, we did not probe into personal experiences of racial discrimination or medical mistreatment. Further, we acknowledge that FGDs may preclude some men from sharing more personal or vulnerable perspectives; in-depth interviews may help to overcome this barrier in future studies. Nevertheless, these data are convincing of need for the medical community to work closely with communities with a history of medical mistreatment to dispel myths and regain the trust needed to conduct medical research and disseminate the medical breakthroughs that will directly serve their community-defined reproductive interests. Our alignment with Healthy African American Families helps to mend a history of mistrust, a strategy that we recommend. HAAF facilitated productive and progressive discussions on racially sensitive topics. As the study’s community advisor, HAAF provided context for understanding the participants’ perspectives, which in turn allowed our discussions to progress from that of a researcher asking questions for their own benefit to that of a community-invested partner inquiring about the experiences of Black Americans and wanting to build relationships that will lead to greater reproductive health engagement [25].