Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing 1st Edition

CHAPTER 10

“Keep it in the Family?”: Other Disclosures Beyond Kin

“My genetics is private,” Tim, the lawyer, said. “It’s no one else’s business, unless they’re my family or very close friends.” These men and women face conundra about disclosing in not only familial and medical contexts, but other social worlds—with bosses, coworkers, neighbors, and friends. In seeking to obtain social support, but elude discrimination, they confront quandaries about exactly how privateto keep this information. Outside one’s family, social and therefore moral bonds and obligations to divulge may decrease. In part, non-kin to whom a patient discloses are not ordinarily at risk themselves, and thus don’t need to be warned. Medically, revelations here about genetics are not directly important. Rejection may also be more likely and costly. At the same time, norms about divulging illness in these settings are far fuzzier than in families.

These men and women inhabit multiple complex social worlds in which they have to decide whether, whom, what, when, and how to tell. People vary in the degrees to which they want to share intimate details of their lives and feel comfortable doing so, and welcome the support and advice that they may receive as a result. They tend to be more or less open as opposed to private. However, with potentially taboo or stigmatizing information, they may feel or fear rejection or discrimination. How then do they navigate between these goals?

While within families disclosures can inform members of their own risk and, depending on the disease, of possible screening, treatment, and reproductive options, outside of families disclosure has far different functions, benefits, and costs. In nonfamilial settings, some people may reveal their genetic risks because to do so could advance public education, or because the information is an important part of their identity. Yet other patients remain far more circumspect. In these situations, secrecy and divulgence concerning genetic risks is generally not an all-or-nothing proposition, but rather varied and nuanced. One may share certain information with some friends but not others.

Outside the family, social norms about sharing personal information may be more implicit, murky and unspoken. Quandaries thus arise of how exactly to decide what is “private” and what is not. Bill, the salesman who doesn’t discuss HD with his siblings, described such unvoiced rules: “You know what’s going on, but don’t talk about it.”

FROM CLOSE FRIENDS TO “GOING PUBLIC”

Patients face these questions in a wide range of relationships—from close friends to acquaintances to the broader public. Regarding revelations about genetic risks, these worlds vary widely in comfort, appropriateness, and acceptance.

Implicitly or explicitly, with different individuals patients range in the degrees to which they see genetic information as private, prompting disclosures selectively to some people but not others. Across these social spheres, secrets vary in their acceptability, and size, depth, and darkness.

Some have told only their immediate family and no one else, not even physicians. Yet as we will see, in social settings “keeping up appearances” in these ways can carry costs.

In these diverse social worlds, other individuals disclose for public and personal reasons. Several rationales cut across settings, while others appear more specific to particular situations. In general, individuals divulge because they want support, feel their genetic risk is an important part of their identity, and want to use their experiences to teach others. In certain social worlds, disclosure can also occur as a way to justify time spent on medical appointments. As Laura, the graphic designer who had been an environmentalist, said about her breast cancer,

I want people to know, because it increases awareness, and it’s a part of who I am. It makes me. I want people to understand: when I say I have to go to all these doctors, I’m not just a hypochondriac.

The information can specifically instill in others the need for disease prevention. Many women discuss breast cancer with each other to encourage self-exams. Ori, the Israeli, said,

I’m extremely open about it, telling everybody to check their nipples, because my particular inflammatory cancer started with a tiny little nipple discoloration. No one knows to look for it. It’s not an embarrassment.

She divulges not because her disease is genetic per se, but because she feels it is preventable.

Still, to disclose in these worlds, patients often have to overcome feelings of shame and embarrassment. At the same time, to keep wholly private an experience that has transformed one both physically and psychologically is difficult. Laura has worked to accept her BRCA mutation, compelling her to talk about it further. She feels marked as “special,” though this was clearly a mixed blessing. “People like to show off their scars,” she said. “It makes me tougher. I feel sort of marked, like in The Scarlet Letter, with a ‘C’—for cancer.”

As suggested earlier, others feel that because of visible evidence of the disease or treatment, they do not have a choice whether to tell or not. Physical symptoms or treatment effects can reveal disease. For Alpha, having a permanent IV line or carrying oxygen can be obvious and potentially stigmatizing. Here, disclosures may not always be planned. Jennifer, the schoolteacher, said,

I have an infusion port for IV Prolastin. I swim, and people in the dressing room walk around with just a towel on. Over the years, a couple of people have asked me what it is. I say, “Well, I get weekly infusions.” They then think I have cancer. They usually don’t ask, “What do you have?” At one time, it was embarrassing. But I forget about it now, until I see somebody looking.

Genetic diagnoses may arise in conversation because of the effects of the disease in one’s family, not oneself. Ordinary, casual social discourse may include information about one’s family. As Ron explained, “My twin brother died, and my older brother’s dying, so it’s going to come up. But I don’t feel a need to tell everybody. If it doesn’t come up, I don’t talk about it.”

Others hesitate to tell friends out of concern about burdening them. One’s claim on friends is often less than that on kin. “I haven’t told a lot of good friends,” Tim said about his HD. “It wouldn’t make me feel any better, and would make them feel worse.”

Yet disclosure can make friends closer; conversely, closer friendships may allow or even mandate more disclosure. One’s genetics are integral to oneself, but whether one should therefore share it with others can be very unclear. To do so can feel akin to sharing one’s nakedness—full, unguarded exposure. Individuals may grapple with the exact degree to which genetics is part of them—whether the “specialness” of this information necessitates more secrecy or more sharing. Bill, who feared getting HD, was highly concerned as a salesman about outward appearance:

Your genetic makeup is your makeup, and it shouldn’t be shared with other people. Why do we walk around with clothes on? Should we just walk around naked? Certain things should be left to yourself or only intimate people around you.

Information can feel shameful, or worse—incriminating. Bill added, “There are things you don’t tell the world: my drunk dad, my financial status, if I broke any laws. It’s private, embarrassing.”

Others simply avoid talking about a diagnosis in order to avoid thinking about it, reflecting possible elements of magical thinking. As Jennifer explained about Alpha,

I thought, “If I don’t talk about it, I won’t get sick.” I wanted to deny I had it. If I didn’t talk about it, it wasn’t real. I wouldn’t get ill. Only since I became more symptomatic have I talked about it.

Breast cancer, and the removal of breasts and ovaries, adds potential embarrassment related to taboos about sex and sexual organs. “I have not really mentioned to anyone that I had cancer or mastectomies,” Diane said. “I feel very touchy about it.” She was upset partly about her unexpected mastectomy. Shame can be irrational, but powerful.

Yet in public spaces, such self-imposed restriction can limit one’s life—even if one is anonymous. “Some people are very open about it,” Diane added, “bare-breasted on the beach. I don’t feel that way. I loved the beach. But I had to stop.”

GOSSIP

In diffuse social worlds without relatively clear boundaries, information can unfortunately spread through gossip. Third party disclosures can readily occur. Patients may want to keep certain information private, while others are eager to obtain and spread it. Only in retrospect may such leaks become apparent. Given these fuzzy social boundaries, individuals may also avoid disclosing to certain friends for fear that the information will disseminate more widely. Once information is out, one no longer possesses it. It cannot be untold.

Such private information, including knowledge of others’ risks, can be seen by others as valuable social capital and sought for social and psychological, if not financial, gain. People seek and transmit gossip to advance their own standing. As Bill observed,

People like to hear things that others don’t know. They get something on you. It’s a little competition: I heard his girlfriend’s going to leave him. It makes you feel better about yourself a little bit. It makes them feel more powerful. It’s sad. Everyone does it.

Yet in social situations, many people may be surprised that information about them, too, is spread. Bill added,

We think no one talks about us. So, if you talk about somebody, it’s hush-hush. If you feel someone is talking about you, you can’t believe it. Yet, you talk about everyone else. That’s just the way it works—it’s washwoman stuff, but almost everyone does it.

Despite one’s best efforts at privacy, information may flow through rumors in varying and unpredictable ways, with uncertain effects.

Some are acutely aware of these dangers and hesitate to disclose their risk, since to do so can be painful and jeopardize one’s confidentiality in additional contexts. Giving information involves bestowing trust on others, allotting them power that they could then potentially use against you. Linda, the art teacher, said, “If you tell someone how you feel, you give them a gift: trusting them to respond to your feelings in a helpful way. It’s been very useful to me to hide some things.” Knowledge is a “gift” in part because it has power, and affirms closeness and trust.

At the same time, norms operate that can deem the transmission of some information to be inappropriate, illicit, and taboo. Still, people may publically disavow their desire for information, while privately still seeking it. Paradoxically, needs for privacy stem in part from the fact that people assume that it is elusive.

Given these complexities, a few patients confront such secondary disclosure when they learn of it, but to do so is rare. Jennifer added,

If somebody says something to me about my illness, and I didn’t tell them about it, I’ll say, “If you want to talk about illness, talk about your illness, not mine.” I don’t want people to view me as sick.

Her reluctance to be perceived as sick may flow in part from her own difficulties in seeing herself as “flawed.”

A few people accept secondary disclosure among a group of friends, highlighting how complex relationships may be within a social network. Yet within such a group it is not always easy to rigidly differentiate close friends from more casual acquaintances. Information may still circulate more than is desired or assumed.

Disclosures can also strengthen relationships, with listeners offering support. Yet such responses can be hard to predict.

Moreover, not wanting to disclose differs from not wanting others to know. Some patients do not want to have to tell a third party (to avoid having to manage immediate psychological reactions), but do not mind if someone else gives that person the information. At times a patient may even want a friend to tell mutual friends.

But friends who are told then have to decide whether or not to share the information with others. Consequently, patients often attempt to assess the trustworthiness of others—the likelihood that these friends will not spread rumors. Patients vary widely in the degrees to which they tend to trust others, and are open or private. While within families, one may feel obligated to disclose because of moral bonds, among friends, one generally has more latitude.

WHAT TO TELL IN SOCIAL SETTINGS

In these fluid and diverse social situations, quandaries also arise about what exactly to tell. Again, these issues resemble—but also differ from—those with family members, since here the social and moral bonds, expectations, and obligations are generally far less. Casual and ill-defined social worlds pose challenges of how to talk about one’s genetic make-up and mutations. Particularly with acquaintances or relative strangers, some speak indirectly or in code. “If somebody is smoking, I’ll say, ‘Oh I have a lung problem,’” reported Barbara, the part-time professor with Alpha. “They don’t need to know the whole story. I think I pass very well.”

People may ask about one’s health, but want to hear that essentially everything is now fine. Individuals may each prefer to maintain a certain safe distance and not want to get closer; disclosure of illness can threaten to narrow the separation. The two parties may or may not agree on this distance. Yet as Betty, the designer, said about her Alpha,

Usually, people just react with, “Oh, well, you’re O.K. now, aren’t you?” People want to hear that everything is O.K. So, when anyone says, “How are you feeling? Better?” they usually don’t really want to know any gory details.

But partial explanations may not always be accepted. Therefore, people may simply disclose as little as possible, in order to avoid having to elaborate later. Betty continued, “If I say ‘Alpha,’ I have to be ready for further explanation, which remains difficult for me to understand, so I wouldn’t tell anyone in passing.”

Patients may give only partial, coded information. The fact that the disease is rare can itself exacerbate social difficulties, necessitating additional explanations. For Alpha, patients may say simply “genetic emphysema”—since people have generally heard of emphysema—but not chronic obstructive pulmonary disease (COPD) or Alpha. As Gilbert, the factory worker, said,

Typically, I explain that I have a genetic disorder that leads to emphysema or COPD. Everybody understands emphysema. They don’t all understand COPD. I explain to them what it is, and what Alpha-1 is, and how the enzyme works—as much as they’re interested in learning.

Recipients of information can vary widely in how much detail they want or comprehend.

Other patients will claim that they have a better-known, less stigmatized disorder. At times, Roger, tested for HD only after having problems driving, claims he has Parkinson’s disease.

People think I have Parkinson’s. They’ll say “Oh Parkinson’s?” And I’ll just say “Yes,” because that’s what they think. To explain what I have takes so long. No one understands Huntington’s.

Yet he has trouble accepting his diagnosis himself.

The degree of closeness may also determine the extent of detail. The broad category of “neurological disease” may suffice with friends, but not with family members who may themselves be at risk.

Given the complicated pros and cons of divulgence in these amorphous social worlds, many wait to disclose until they are less vulnerable to possible adverse consequences. Karl, who eventually learned he lacked the HD mutation, said, “I didn’t share the result before I tested. I was concerned about insurance. But, afterwards, I felt pretty comfortable telling people.” Still, he reveals his risk, but not the traumatic effects of the disease on his family.

Patients also face quandaries about how to tell—for example, whether to do so in person, through email, regular mail, or phone. Ever widening circles of friends exist, and the logistics of telling a group can be difficult. Email offers advantages, but can lead to misunderstandings as well. Vera, the Asian executive, felt that emailing her BRCA mutation-positive test results to friends would be emotionally easiest. But problems arise.

I emailed the information the day after I got tested. I thought it was better than telling in person. I was still a little shaken up, and thought I would start crying on the phone. Most were very supportive. One was totally in shock, and couldn’t deal with it. I confronted her. Supposedly, I misunderstood her email.

DISCLOSURES AT WORK

Given blurry social boundaries and possibilities of gossip, disclosures at work can pose particularly thorny dilemmas. Closeness to bosses and coworkers has to be balanced against fears of discrimination. At one extreme, some keep their diagnoses completely secret at work. Still, they may speculate whether colleagues nonetheless know. “I’ve never told anybody at work,” said Diane, the Spanish teacher who felt damaged from an unexpected unilateral mastectomy. “I feel very self-conscious about people looking at my chest. I always wonder if they notice.”

Many fear possible discrimination, even though it would be illegal. As we saw earlier, many are wary of how laws get implemented and enforced. “While it would be morally incorrect to let me go,” said Chloe, the young secretary asymptomatic and untested for HD, “things like that happen.”

But silence and secrecy at work can pose burdens, and carry costs. Many find it hard to hide their diagnosis at their job. Joyce, the spa employee who was in denial, had trouble concealing her breast cancer and finding an adequate wig.

Before the chemo, I got a haircut, and a wig that was very similar in color. But the texture was different, and it was short. Everybody thought it was adorable. They just thought I had straightened it. But I was afraid the wig would fall off. I was so nervous. I had no eyelashes or eyebrows. When I put on makeup, it just slid right off. My face was puffy from steroids. I just tried to duck in and out of work, and hope for the best.

Such concealment can impede accessing disease information that could aid coping. For instance, some defer from using the Internet at work for any disease-related activities—even simply seeking information. Tim, the lawyer with the HD mutation, but no symptoms, said,

At first, I printed out some things, and an associate said, what’s that? I said, “Nothing . . .” I then decided not to look at work. I don’t know if they track my email. Why take the risk? But I don’t have Internet access at home, so I don’t know that much about HD.

At his office, he also does not talk about HD on the phone.

Between the extremes of openness and secrecy, many make more finely grained decisions, trying to temper threats to privacy as much as they realistically and comfortably can without causing too much harm—for instance by limiting their Internet use while at their job. John, who turned out not to have the HD mutation, said,

I was concerned not about going to HD sites, but receiving HD emails at work—though I did. So I started to transition HD stuff to a private AOL account. I didn’t worry too much about it, but when I saw Huntington’s disease in the subject line, I thought: that probably isn’t good.

Even searching for information about HD on the Internet can instill caution. Simone, the bookkeeper with the mutation though no symptoms, is more concerned—in part because she is only 29, and hopes to have a whole career ahead of her. At her office she tries to restrict her HD-related web use in other ways. Such precautions may seem extreme, but she feels that her very life and death are at stake.

I’m kind of paranoid. I look up other diseases from work—MS and other neurological disorders. So it looks as if I’m just looking at WebMD in general. But I can’t sign in to the HD Society site. I would be afraid somebody is watching me . . . I would hope that they would say, “Well, she’s just hitting everything”—not specifically HD.

At the other extreme, depending on the nature of the organization—specifically the degree of closeness to colleagues, and fear of discrimination—people may be fairly open about their genetic risk. Anxieties about discrimination may depend in part on length of time and amount of trust with an employer. Patty, the fashion designer untested and asymptomatic for HD, said about her risk,

Now, everybody at work knows. I’ve been there eight years, and they’re like my family. I work for a small design studio. When my mother does things that really upset me, I go to work and cry. I never thought, “I shouldn’t tell people.”

Employers’ questions about family members can reveal one’s own risk, too. A relative’s diagnosis could thus arise when being interviewed or hired for a job, or having to fill out forms for new insurance. Consequently, worries about bias can lead patients to prevaricate about their risk. Yvonne, with lung transplants, assumes that her siblings either dissemble about their risk of Alpha, or are not asked about it.

I’m sure they lie about it, or just say no. Employers don’t ask you if any family member has a genetic disease—just whether you or your immediate family have it. My siblings wouldn’t think that sister or brother would be immediate.

Needs for treatment can also prompt disclosure. Consequently, some may disclose at a prior job—when ill, and needing time off for hospitalizations and treatments—but not at a new position, when no longer acutely ill. At a new workplace, disclosures may in fact be rare—occurring only if the topic comes up, and seems appropriate. As Rhonda, the nurse with breast cancer and a mutation, said,

At my last job, I told some people I became friendly with. Not just in a general conversation: “Hi. How are you? My name’s X and I had breast cancer.” But if I felt it fit into the conversation. Girls talk about bra sizes. Now, at my new job, I work with different types of nurses. Some know, some don’t. If it comes up, I don’t have a problem telling someone. I facilitate breast cancer support groups. So if I hear someone has been diagnosed, I’ll pass the contact number along.

Thus, she tells if she thinks the knowledge will help someone. As a health care provider, she may also encounter less discrimination than do employees in other fields.

Severe symptoms and needs for disability can force disclosures as well. “Everybody knew,” Benjamin, the engineer, said about his Alpha. “I thought I was going to die, and need disability.” Jennifer told no one about her Alpha for 12 years—until she required time off from her job as a teacher. Exhaustion and desire for a sabbatical necessitated revelation.

One may tell because of family needs that result from a disease for which one is also at risk. Bill, the salesman, asymptomatic and untested for HD, told coworkers about his risk because he experienced stresses caring for his brother. Only later did he become concerned about the information spreading. Therefore, in work settings, as in other social networks, individuals have to carefully weigh their wishes to tell and gain support against their fears of gossip and stigma. To negotiate between these conflicting goals poses shifting problems.

Telling Bosses

With supervisors, too, patients face particularly tricky questions of whether, what, when, and how to divulge information. Bosses may have an inkling about a person’s condition, yet feel constrained from asking, not wanting to be in a position of knowing too much. They may have to separate their personal and professional roles and knowledge. Patty, the fashion designer, said, “One of the partners knew that my mom had something, but never asked about it.” Occasionally, bosses might be surprisingly supportive because of their own illness experiences. Employers vary widely in whether they talk about their own problems, and if so, how much. Susie, who worked at an HIV organization and had a family history of breast cancer but no symptoms or mutation, found her boss to be very open about medical problems. Susie suggests how the ethos of different organizations can range widely from for-profit to nonprofit, and from health-related to not. Still, individual personal differences and idiosyncrasies can play major roles as well. She reported,

I told my boss I had a cyst. In the past, he had told me what was going on with him and his wife—from trying to stop smoking, to thinking he had lupus. So it wasn’t out of context.

She underscores how employees may take their cues from employers in defining the boundaries and scope of these relationships.

Especially for breast cancer, female bosses may possibly be easier to tell—but not always. For Vera, having a woman as a boss facilitated disclosure:

She knows what I’ve been going through. I went for the genetic test results at lunch, because I thought I was just picking them up and coming back. I ended up staying out. By four, I called her and told her what was going on. I wouldn’t say she’s my friend, but I felt comfortable telling her. I feel secure enough in what she thinks of me and my abilities. If my boss was male, it probably would not have been as easy to tell him.

She distinguishes here between the roles of employer and friend. The two roles may share some features but not others, and may be fluid but at times also constrained.

Tensions can emerge between an employer’s official and unofficial knowledge—between what a boss feels is appropriate to ask or know and what is not. Complicated choreographies can result. Patients may want support and some flexibility—which can be difficult, if not impossible, to obtain. Linda, the art teacher who eventually found she lacked the HD mutation, said,

I wanted my boss to know that something was up, and that he should be extra nice. I would say cryptically, “I have a medical thing I have to take care of,” and kind of hope or convey that I wasn’t really O.K., and that it would be good if he asked after me. A couple of times he did: “Are you . . .? Is everything . . .?” I wanted a little bit of support without revealing anything. He felt it was private. He gave me some leeway. I didn’t want to get any slack, like I was doing something irresponsible by missing a meeting.

This intricate dance—revealing the existence, but not the nature or extent of a problem—can involve much back-and-forth and indirect communication.

Patients who are themselves physicians can face additional problems, as colleagues may be surprisingly distant. Jim, the doctor with HD, got little if any support from colleagues. “No one ever says anything to me about having Huntington’s,” he said. “They have a hard time dealing with illness. They don’t really know how to react.” Doctors often feel that they must sharply separate themselves from illness, and that they wear “magic white coats,” and are supposed to be healthy. They may feel that becoming ill themselves threatens this fragile veil between patient and healer.1

Telling Coworkers

Coworkers also occupy peculiar in-between roles—as “work friends.” They may be close, but potentially convey personal information to others who could in turn tell bosses, precipitating discrimination. Still, fellow coworkers can be easier to tell than supervisors, who have the power to hire and fire. But many individuals find that their social and work worlds overlap or collide. Friends may be (or know) coworkers or employers, muddying clear and definitive boundaries. Hence, some divulge to coworkers very cautiously. Particularly in a small community, disclosure of genetic information at work can implicate one’s relatives as well. Chloe, untested for HD, is a secretary at the same company as her sister and sister-in-laws. Her sister “hasn’t told her in-laws yet. I definitely can’t tell anybody!” Chloe did not mention her risk at work—largely because she didn’t want to call attention to her sister’s early evidence of disease.

The risk of gossip spurs efforts to gauge the trustworthiness of coworkers. But doing so can be difficult. Some struggle to assess whether coworkers maintain others’ confidentiality. As Vera said, “If someone says, ‘This person told me this, and told me don’t tell anyone, but I can tell you’—that’s a red flag.” Yet concealment can carry costs as well. Secrecy can necessitate obfuscating the truth, complicating even innocuous conversations. To hide the presence of a disease in one’s self or one’s family can be difficult, if not impossible. Evelyn, whose husband forbade her to test and whose father had hidden a relative’s letter about HD, said,

My sisters tell no one. But when my grandmother, who’s 94, dies, a lot of work people are going to show up at the wake. “How do we keep Mommy home?” My sister said, “Slip her Ex-lax or a diuretic. She’ll have diarrhea, and won’t be able to come.” We can’t do that. We’re just going to lie, and say she has MS.

Secrecy can thus span several generations, because of fears.

Concealment also entails foregoing support, and risking the possibility of getting caught. Barbara, the part-time professor and former smoker, keeps her Alpha secret but pays enormous psychological costs, as she fears being discovered.

I have to put up a false front, and live a double life. My Prolastin comes to my house and I refrigerate it. What if someone from work comes over, looks in the fridge, and says, “What is this?” I’m constantly at the point of potentially being caught.

The fact that she used to smoke makes her feel potentially culpable for her illness, exacerbating her sense of shame.

Divulgences to colleagues may also occur unintentionally and unplanned. One cannot always suppress sudden strong emotions about one’s disease. Laura, the graphic designer with a family history of breast cancer and the mutation but no symptoms, said,

I spilled my guts to my coworker. We were having a meeting, and I just had the genetic counseling appointment, and couldn’t help saying something because I knew I seemed negative.

Revelations can also become mutual. These reciprocities highlight the intricate implicit rules involved in work disclosures. Often one does not know about another’s illness until disclosing one’s own. Laura added,

Everybody has something. You don’t know until you talk. My coworker has been more open. He gives himself shots five times a day at work, and has to regulate his blood sugar. What a pain. But he’s so discreet. I wanted to ask him more, but didn’t know if he was comfortable. Maybe there’s a reason he didn’t talk about it before. All he needed was someone to ask.

She highlights the implicit norms of divulging only if asked, and otherwise maintaining silence. Yet it is also possible that a graphic design studio may be more open and less discriminatory than certain other kinds of workplaces.

Still, others who felt compelled to disclose because of an emotional upset later regret doing so. Secrecy can be hard to maintain at a job. An office-mate may be told—but that person then knows forever. The eventual effects of a disclosure can not always be predicted. Linda, the art teacher who found she lacked the HD mutation, said,

I told a woman I share a little office with. Somehow, it came out. Then I felt, “Oh shit.” I swore her to secrecy. I was probably on the phone, really upset, or just said, “Yeah, geez—my dad had blah blah blah.” But after I told her, I had to share with her what I’m going through. I felt she’s watching me, listening to my phone calls, wondering if I’m O.K. When the whole Huntington’s nightmare starts—“Oh shit . . . now she’s going to know.” I felt exposed, and wished I had kept it to myself. Although during this very hard year, having one person out there who knew was not the worst thing in the world.

Linda highlights the conflicts involved. Disclosure can offer both advantages and disadvantages, generating social support but also worries about gossip. In retrospect, a few feel they have been too trusting—especially concerning HD. “I’m very naïve,” said Patty, the fashion designer. Luckily, she turned out to lack the HD mutation.

Coworkers can respond to these divulgences in various ways. To disclose is to enter the “sick role,” raising quandaries about when to enter and exit that role. Coworkers can become jealous of an employee who goes on disability without seeming to be severely ill. Even fellow teachers, for instance, thought that Jennifer, with Alpha, was “pulling a fast one over them: ‘You look pretty good.’”

Consequently, individuals must assess coworkers’ implicit attitudes and indirect comments. People are generally able to select their friends, but not their coworkers. At work one usually spends large amounts of time with individuals whom one has not chosen, and who may or may not be supportive. “I just get the vibe,” Jan, with breast cancer, but no mutation, said about the need to be circumspect in her office. “They make little rude comments.”

Telling Clients

In business, those who have worked closely with customers over several years face additional disclosure decisions. Generally, one is much less close to clients, and somewhat financially dependent on them. Carol, the saleswoman with breast cancer, a mutation, and prophylactic surgery, told only a few customers about her illness. Yet after finishing chemotherapy, she removed her wig.

I was bald, and wearing a wig, and 90% of my customers didn’t even know. They’d say, “Oh, your hair looks really great. Did you change your style?” People are so oblivious. I told a couple of customers, but not others. Then I finished my chemo and took my wig off. My hair was short, and people said, “Are you Hare Krishna now?” They didn’t get it. It was bizarre. The first time, with breast cancer, I might have told 5% of customers. With ovarian, maybe 20%. I tell close customers, but don’t feel that comfort level with customers who I don’t really have a relationship with, or don’t see on an ongoing basis.

She suggests wide variations based on the individual client, rather than their social role alone.

Telling Neighbors

Patients also face questions concerning disclosures to neighbors who may see medication deliveries or symptoms. Ginger, the medical secretary, goes so far as to scrape the labels off empty prescription bottles that she puts in the trash.

When I throw any medicine bottle away, I pull the labels off with my fingernail. I don’t want people picking up prescription bottles, “She takes Xanax, or antibiotics, or Theodore, or inhalers.” Kids once picked up a big bag of trash from the alley behind our house and threw it on somebody’s lawn. The next thing I know, the police are knocking on my door, “What’s this? You’re littering somebody’s lawn up the street!”

Telling Schools

Dilemmas arise, too, concerning telling schools and other institutions. To inform schools about a parent’s genetic risk can create problems for his or her children. Mary fears that if her children’s school know her HD diagnosis, they may take her children away.

My son and daughter are speech delayed, because I can’t help them. They’ll say a word wrong, and I don’t correct it. I don’t know why. I want to tell the school, because I’m having a hard time getting my oldest son’s homework done, and reading books with him. They probably think I’m a terrible mother. But I’m not telling them, because I’m afraid it will backfire, and they’ll watch me, and find more wrong than I want them to. I don’t want any outside agencies involved. I don’t know why I don’t read—why I can’t get it done. I say, “Oh, we’ll do it later.” I’m always putting it off, and then it never gets done. I feel bad.

CONCLUSIONS

Across these varied social domains—from friendships to jobs to schools—individuals struggle with dilemmas of whether, when, what, and to whom to reveal their genetic risk. These questions require careful balancing of competing concerns. Individuals often feel they should tell others with whom they are close. Such revelations can also serve to increase awareness and education about a disease. But discrimination can ensue. Disclosures may occur in families, because of social bonds and moral obligations that can be explicitly discussed and reinforced, and physicians and insurers may explicitly ask patients for genetic information. But in other social worlds, such norms and expectations are far more implicit, fluid, and complicated, begetting confusion and conflict.

The experiences here illustrate important aspects of work and social networks—their plasticity and lack of clear or strong boundaries. Definitive boundaries generally exist in families, separating kin from non-kin, but not in these other social worlds. Outside the family, trustworthiness can be hard to gauge, confounding disclosures of genetic information and thus patients’ support and experiences.

In these other social worlds people frequently try to guide and monitor the dissemination of information about their genetic risk, but they do not always succeed. The fact that one’s genetic data reveals information about not only oneself but one’s family makes these issues even trickier. Coworkers may meet or know family members whose illness can then suggest the employee’s risk, and vice versa.

These challenges should prompt rethinking of these social norms. Increasingly, many of us will face quandaries about whether to share our own or others’ genetic information. We will confront secondary or third-party disclosures, and have to weigh trust against possible gossip, and perceived benefits against potential dangers of revelation. We may try to erect social boundaries between who does and who does not know, but with mixed success. As we will see, genetic information can also fundamentally alter our social worlds.