Too Much Information

On a warm spring day in 1996, I heard a knock on my office door in the Department of Psychiatry at the University of Rochester Medical Center, where I’d worked for more than a decade helping patients deal with the emotional impact of long-term medical conditions, such as infertility, cancer, seizure disorders, and chronic illness. I opened the door and there stood an older man in a long white coat, his rust-colored hair rumpled, looking exactly the part of a brilliant but slightly distracted physician-scientist. He said his name was Peter Rowley. He was a highly respected medical geneticist, who’d recently completed one of the early studies testing high-risk women for the rare but potent BRCA1 and BRCA2 genetic mutations. n Many of the women he’d studied had tested positive for the mutation, which meant that not only were they highly likely to develop breast cancer if they hadn’t already, but their sisters and children might develop it, too. Now, a year after his study had been completed, these women were still calling him, still distressed about the positive result, still anguishing about how they should deal with the burden of this new knowledge.

Many of them had requested and received preventive mastectomies. But the medical fix hadn’t begun to “fix” the emotional and relational problems the test had raised for them. They wanted Dr. Rowley to help them with the existential dilemma they found themselves in, after the testing. What did this knowledge mean for them and their families? Should they tell others who might be affected? Should they live their lives as before or radically alter them?

“Is there anything you can do for them?” he asked me, earnestly. As is still often the case in the crossroads of therapy and medicine, my first thought was, “I have no idea.” But to him I said, “Sure! I’ll think of something.”

When scientists broke the human genetic code in 2003, we discovered that almost all diseases and conditions have a genetic component—not just in their cause, but in susceptibility and resistance to them, their progression, and response to treatment. We all have genetic conditions related to certain diseases; some of us know which ones, others don’t.

Genomics is the term given to both single-gene and multifactorial genetic conditions. The term covers the interactions among genes and those between genes and the environment. Genomic conditions include heart disease, diabetes, some breast and colon cancers, Alzheimer’s disease, and schizophrenia. Today individuals and families can take advantage of genetic screening or testing, which can identify the likelihood that a person might develop an inherited disease. But then what? Peter Rowley was asking me to help the women in his study deal with the then-what question.

Setting up a Psychoeducational Group

Working on a frontier alone is never wise. Luckily, in an academic health center, I had many fine colleagues to call upon. I immediately contacted Jenny Speice, a family therapist with whom I’d worked in the Fertility Clinic. Our first step was to find what resources already existed for effective psychological services following genetic testing. We searched Medline and PsychLit, and found none. So, drawing from work with people suffering from chronic illnesses, We quickly put together plans for a six-week psychoeducational group for the women from Dr. Rowley’s study.

We made it up as we went along. There were nine women ranging in age from 32 to 60. Two of the participants were sisters, and another pair comprised a woman and her niece. Six had already survived breast cancer.

Each week for 15 minutes, Dr. Rowley and his genetic counselor answered medical questions and communicated new technical information about the gene, the disease, or its treatment. After providing data and answering questions, he’d leave—rather abruptly, I thought at the time—and Jenny and I would spend the remaining 75 minutes discussing the emotional and relational issued raised by the medical facts.

These sessions were intense. The women were hesitant at first, but quickly bonded as they discovered their shared experiences and felt understood for the first time. Some weeks, the women talked about how their loved ones had reacted to the results of the testing. They agonized over their children, siblings, nieces, and nephews who might be at risk, whom to tell, how, and when.

Cathy, a young nurse who’d had breast cancer at age 26, after the birth of her first child, tested positive while pregnant with her second. Both she and her husband were startled by the test result, which indicated an increased risk for recurrence and the potential that their two baby girls could have the mutation as well. They decided to spend a year circling the wagons around their family, adjusting to the news and to having young children. Toward the end of that year, they heard that that Cathy’s first cousin, Patti, had breast cancer. Cathy immediately contacted her and told her of her own mutation status. Patti was furious that Cathy hadn’t told her sooner, imagining that if she’d known this information, perhaps she could have taken some preventative measures. Cathy told the group how awful she felt. She was grateful when they helped her compose a letter to send to all her relatives, telling them of her status and giving them information about testing whether they were at risk.

The women were worried about what to reveal to their insurers, coworkers, and bosses. A few feared they might be fired if their bosses knew they might potentially miss time from work; others worried they might lose their health insurance. They shared their own emotional reactions and coping strategies, their struggles with body image in the aftermath of mastectomy (Polly’s boyfriend broke up with her after her decision to get a preventative mastectomy), and their relationships with doctors, nurses, and other health professionals.

Tessa’s family, who worked together in a small business, had the strongest negative reaction of any in the group. She told us that she’d urged her adult son to participate in the study, and he tested positive for both the BRCA1 and BRCA2 genetic mutations. Both her son and his wife were furious with her, though. Her daughter-in-law told Tessa, “Now, when I look at my daughters, I see death on their faces. I’m angry at what you’ve done to our future.” The son stopped talking to her, feeling that she’d robbed him and his wife of their equanimity and confidence about the future, which they’d probably never regain. In the group, Tessa developed a new perspective on how different her knowledge-seeking and proactive way of coping was from that of her son and his family. “I’m glad I had the testing, because it provided the kind of education that’s keeping me alive,” she said. “For me, it’s important, but now I feel guilty that I pushed so hard with my kids. They really weren’t ready to find this out, and might never be.”

Recent reviews conclude that most patients aren’t significantly distressed after testing positive for a genetic condition. For some women, the test may verify what they always believed about their susceptibility to a disease that runs in their family. These researchers typically study women a few weeks to a few months after learning the results, so it’s possible that the short time frame or the measures being used don’t accurately reveal the complexity of responses to the test results. The early studies also show that a significant subgroup with premorbid emotional or interpersonal problems experience significant dysfunction in coping with genetic testing or illness.

The women in our group were functioning well in their lives before the tests. Given all the breast cancer in their families, they expected to have the mutation. They’d received good pretest counseling. Even so, all of them said that they’d vastly underestimated what it would mean to know they were positive for the breast cancer mutations. Sarah, a successful banker, said, “I’ve grown up with cancer all around me. My mother died of cancer when I was 14, my aunt survived two bouts with cancer, my grandmother as well. Still, the knowledge that I have the mutation putting me at increased risk, while my sister doesn’t, has created tension between us. I know she gets angry with me because she feels guilty, but that doesn’t help me deal with the situation. My best friend has been wonderful, but my husband still won’t talk about it. ¥It is what it is,’ he says. Most of all, I pray that my daughter doesn’t have the mutation. She’s 16, still too young to decide about testing, but she’s convinced she has it.” As Sarah’s reaction indicates, knowledge can definitely complicate your life.

Genomics Is Coming to Your Town

While genomic science may seem remote for most of us today, it’ll affect us, our families, and our patients in the coming decade. The technology associated with genetic testing, embryo selection, and genetic engineering to improve treatment for intractable diseases is astonishing. The Genetic Revolution is upon us, but our heads are way ahead of our hearts. As a therapist, I find this situation sobering, scary, and stimulating.

To give one example from this uncharted territory, it’ll soon be possible for us to have individualized health information, based on our genetic blueprints, which will reveal our risk for a variety of chronic illnesses, from heart disease and cancer to asthma and Alzheimer’s disease. Though most individuals adjust to the information over time, others experience feelings of guilt, shame, anger, fear, and isolation. The impact on a family can be enormous. The process of learning about a genetic condition can activate problematic patterns of communication and challenge family roles and beliefs.

Genomic science raises many psychosocial questions, such as: Will we take preventative measures to decrease our risk for illness? What will be the effect of knowing on family relationships? Will genomics affect our choice of partners, plans to have children, or relationships with our adolescents?

One group of orthodox Jews already insists on genetic testing before blessing a couple’s marriage, because of concern about genetically linked diseases that are common among Jews. But trying to prevent the genetic transmission of disease by controlling reproduction has generated strong opposition from disability activists. They argue that selective screening of embryos before implantation in order to eliminate those with genetic mutations for disease is really a high-tech form of eugenics and could lead to greater social intolerance of people with disabilities. Certainly this new science raises a dizzying number of ethical issues.

Then there’s the problem of disclosure. In our individualistic culture, newly emboldened with HIPAA (Health Insurance Portability and Accountability Act) legislation designed to protect patient privacy, should family members know about their increased risk if a member tests positive but prefers privacy? Therapists can act as valuable consultants in these matters. A cancer center outside of Rochester called me last year about a man who’d lied to his family about his tests, telling them he was negative for a cancer mutation when, in fact, he was positive. His son and daughter thought that they had no need to be tested or worry about this disease, when actually their father’s result put them at increased risk. The genetic team of professionals was distressed about what to do. Though I’d been a medical family therapist for nearly 25 years, these were issues I hadn’t faced before.

After some thought, I suggested that the geneticist describe the problem to the man’s primary care physician, to whom he had consent to release the results. I suggested that the primary care doctor begin by discussing the guidelines for his cancer surveillance, and develop a mutually-agreeable approach to prevention and early detection for this man. As would occur in medical family therapy, I suggested he explore communications with other family members and their reactions, and then focus on the children, framing the man’s original response as protective by intention but harmful in fact. I also suggested that a family therapy colleague join the family doctor to see the man during a primary care visit. Perhaps together, the doctor and therapist might be able to help this man feel less fear and guilt and more motivated to communicate honestly and constructively with his children. This approach complied with HIPPA regulations concerning privacy, but included steps to soften his destructive denial.

Reproductive Genetics

My work on genetics drew on earlier experiences working with women who were having trouble getting pregnant. Just out of fellowship training in 1980, and the only female therapist in town with a doctorate, I found myself receiving a lot of referrals for women struggling with infertility. Perhaps they’d learned that my father was an obstetrician/gynecologist, and that their stories had been part of my childhood.

Within a few years, many fertility clinics, including ours at the University of Rochester, decided that psychological evaluations would be useful to complement this rapidly-advancing scientific technology. As a result, I’ve conducted these evaluations ever since, seeing women and their partners who have trouble with reproduction and are considering new reproductive technologies, such as in vitro fertilization (IVF). Some use anonymous donors, others family members or friends, when their own eggs or sperm aren’t viable. I insist that both donors and recipients be evaluated with their partners. They each take a psychological test, and I interview the donors and recipients on separate days. When the donor is known, I bring the donor, recipient, and their partners together for a group interview.

Inevitably, discussions in my office turn to issues of genetic continuity—the passing of genes from one generation to the next—which is important to some people in building a family, and not to others. Recently I saw twins and their husbands. One twin had two children, the other was infertile. The infertile twin was undergoing evaluation for IVF. Her husband’s sperm would fertilize her sister’s donated ova, and the resulting embryos would be implanted into her uterus to see if she could achieve a successful pregnancy. The psychosocial issues were obvious: boundaries (Who would be the “real” mother?), roles (What role would the egg donor/aunt have with the child?), loyalties (How indebted would the recipient feel to the donor, and how would that affect their relationship?). During the family interview, the fertile sister said to her twin, “Look, you got the brains, I got the eggs. The least I can do is share them.” The conversation was difficult at times (all parties only wanted to think about the potential baby), but the session helped everyone begin to think about the long-term effects of their actions and recognize that a range of emotions might result. About nine months later, I witnessed the outcome at an annual picnic held by the Fertility Clinic for patients who’d had babies in the last year: another set of twins added to this family, each baby held lovingly by a beaming parent.

Dealing with a Single-Gene Disorder

Some time ago, I saw a couple, both well-established community leaders, with a picture-perfect marriage on the surface, including traditional gender roles. Rob was tall and outgoing, while his wife, Marian, was petite, somewhat shy, and emotionally dependent on her husband. Rob had a single-gene disorder, myotonic dystrophy (a neuromuscular disease usually involving progressive weakening of the muscles similar to muscular dystrophy). The couple was referred by their astute neurologist, who noticed they were having difficulty adjusting their marital roles as the husband was becoming increasingly disabled.

Rob denied his disability: he was still driving, though he’d had several accidents; he refused to use a walker and other aides, which meant he fell in the bathroom several times a week, requiring Marian to struggle to lift him back on to the toilet or into the tub. His denial was, in part, an attempt to maintain his status in his marriage. Marian was becoming increasingly agitated about her husband’s behavior. She was frustrated with him for not using appropriate appliances and for not taking care of her as he had in the first 30 years of their marriage.

During their third session, I noticed Rob had scratches on his face. When I asked him about them, I was astonished to learn that small, sweet Marian was periodically beating up her husband in the middle of the night when he was asleep! This disclosure precipitated a crisis session, in which I focused solely on the safety in their relationship. I worked to develop alternative ways for Marian to express her anger and for Rob to maintain his dignity. Marian got the message only partially—instead of beating him up, she attacked his car with a hatchet!

Horrified, in the next session, I gathered together four of the six adult children with Rob and Marian to develop a safety plan. We worked together to separate the couple until therapy could help them unpack their grief and anger about the diagnosis and progression of the illness. I saw each member of the couple several times individually to frame their anger and relate it to the illness. I stressed their love and commitment to each other and talked a lot about not letting the illness come between them, telling them that much of their anger was at the illness, not each other, and that they needed to pull together to cope with this unfortunate intrusion. This couple genuinely loved and missed each other, were miserable living apart, and worked hard to find alternatives to violence of any kind.

After several months, when no further violent incidents had occurred, the couple moved back in together and continued to work to adjust to the profound change that had taken place in their lives with the onset of this genetic condition. Rob slowly accepted the need for more devices to help with his disability, relieving Marian of some of the struggle of trying to manage him physically. He also agreed to stop driving, which had been a major point of contention, in part because Marian was so conflicted—knowing that he was a danger, yet yearning for him to continue driving her around town.

After therapy with the couple, I met again with the adult children to discuss their thoughts and feelings about genetic testing for this transgenerational condition. Because it was a single-gene disorder, each child had a 50-50 chance of having the mutation. In fact, three had it and three didn’t.

This family taught me the range of beliefs and reactions families bring to bear in dealing with genetic conditions such as this. Rob and Marian were deeply religious and believed that God had a plan for them. They didn’t understand why God would give such a condition to any human being, but felt it must be part of a grand design. Rob hoped that perhaps the point of his suffering was to allow him to “skip several steps and just go straight to heaven.”

The children had been raised with the same religious beliefs, but expressed different explanations for the family’s affliction. A psychologist son, the rational scientist among the children, believed his father and siblings’ illness was due to “blind, random chance.” His sisters, one positive and one negative, explained, a bit sheepishly, that they’d read a book that contended that, as an angel before you’re born, you may choose to carry a particular burden in the life, like the illness. To the astonished brother, who’d never heard this explanation, one sister said with a smile, “You didn’t choose it!”

I later saw a mutation-positive sister, Annie, with her husband, Brian, for a couples session. They talked about how the positive-test issue tended to come up at times of transition. For example, when Annie and Brian first considered getting married, Annie said she realized she had to tell him, “fast.” She was particularly nervous, however, because once before she’d been engaged to someone who’d broken the engagement when he’d learned that she had the mutation. As it turned out, Brian said that he was fine with the problem, because, he said, he had “someone in his family who was deaf. Everyone has something.”

Risk Assessment and Communication

Of course, it’s impossible to do this work and not become fascinated with one’s own medical family history. Before I was 2 years old, I developed asthma, doing frequent stints in a hospital bed as my parents stood by anxiously. I don’t remember that chapter of my life much, but I do remember my parents’ ongoing concerns about my health, amplified by the fact that my father also has asthma. I thought my two daughters had escaped this genetic plague. But when my younger daughter was 5, after a vigorous soccer game, she had her first asthma attack. My husband rushed her to the doctor and gave the family history before I arrived. When I walked in, the doctor said: “So you’re the cause of all this!” That one comment made me determined to rededicate myself to helping physicians learn better communication skills.

The science of mapping the human genome enables clinicians to find out who’s genetically “at risk” for some illnesses, but a medical map alone isn’t enough. We need a collaborative relationship between physicians and therapists to produce a biopsychosocial risk assessment. In addition to knowing who’s medically at risk for which illnesses, we need to know who, in this group, is at risk emotionally or relationally. Once these issues are identified, psychotherapists can perform invaluable tasks by facilitating informed decision-making; supporting family strengths; helping to prevent depression, anxiety, and destructive family conflict; and supporting individuals, families, and genetic health care teams, with a sensitivity to multicultural issues and health beliefs. Family consultations; individual, couples, and family therapy; sessions with extended family and multiple-family groups—all these formats are useful in working with people facing genetic conditions.

Many medical models of decision-making assume that humans are rational creatures. But people don’t make reasonable health decisions on the basis of data alone. A biopsychosocial risk assessment gives a more accurate picture of how they’re likely to handle disturbing medical information and what this may mean for their health and that of their families. Health psychologist Suzanne Miller has conducted research on how people cope with genetic testing and learning the results. She’s found that most people use two forms of coping—monitoring and blunting. People who carefully, perhaps obsessively, monitor their bodies for any unusual cues are prone to feeling more anxious and vulnerable to disease, but seek information as well—which may help them understand their condition and better maintain their health. Unfortunately, though, with the Internet providing so much accurate and inaccurate information about their conditions, those who monitor can become overwhelmed, distraught, and despairing. A blunting response includes avoiding threatening cues and distracting oneself from unpleasant knowledge. People with blunting behavior may minimize or avoid genetic screening or testing, deny the importance of genetic information, and fail to take steps necessary to protect themselves and their families.

The women in our psychoeducational breast cancer genetics group were all monitors: they sought information whenever possible as a way to cope with their risk and increase their sense of agency. We’re likeliest to see people with monitoring behavior in psychotherapy, although the people who react by blunting behavior are also in need of therapy. The only time we’re likely to see people with blunting styles is when they’re brought in by family members, or when their disease process becomes so significant that the denial doesn’t work anymore.

Even physicians are influenced by their own coping styles when it comes to talking to their patients with genetic conditions. For example, Jill came to my office one day by herself, requesting support and couples therapy for herself and her husband, Joe, who was in individual therapy at the time. Jill told me that Joe’s mother and aunt had Huntington’s disease, one of the traditional genetic disorders, which frequently leads to dementia, psychosis, and a loss of muscular control. Jill had been referred by the couple’s internist, who told them that, while Joe hadn’t been tested, she felt it was unlikely that he’d inherited the disease. I found this hard to believe, knowing that he had a 50-percent chance of inheritance, since Huntington’s is a single-gene-dominant disorder.

Professional collaboration is always important when dealing with medical conditions, so I contacted Joe’s therapist and then the couple’s internist, whom I know well. The internist admitted that she’d been positive with the couple about Joe’s chances to escape Huntington’s. When I asked her what this was based on, she said, “Well, I just really don’t want him to have it.” I said I hoped she was right, and she assured me that she’d share any future information with this couple in a more straightforward way. This internist was clearly relieved to have both these patients in therapy. We agreed to work together as they moved toward a decision on testing.

In the individual session with Jill, she wept as she spoke about being hypervigilant and then annoyed whenever Joe’s behavior was out of line, from twitching while asleep to forgetting his keys. She monitored him closely, saying, “I ask myself every time, ‘Are these problems normal husband-and-wife issues, or does Joe have Huntington’s?'” Testing would provide an answer to that question. But after several individual and couples sessions, Jill and Joe decided that, although they have a loving and committed relationship, they wanted to strengthen their marital communication before going through testing.

We then worked for two years to increase their sense of agency and communion. Some of the therapy was typical communication counseling—working to help each one understand what their partner thought about things, how he coped with stress, how she wanted to be loved. Other parts of therapy had to do with life planning. How would a positive test affect their job and financial planning, their parenting, their relationship? At the end of the time, the couple said they were functioning much better and decided together that they didn’t want to go through testing, since there was nothing medically they could do should the test prove positive.

Perceived Risk and Meaning-Making

What do we make of this choice not to know? Is it unhealthy denial or a reasonable attempt to avoid unnecessary dread, fear, and depression? Given the fact that there’s nothing to be done for Huntington’s disease, perhaps it isn’t surprising that studies show significant discrepancies for at-risk people between their intentions to get tested and their actual testing behavior. In one study, in spite of indicating a desire to be tested, when actually available, only 10 to 20 percent of individuals at risk for Huntington’s sought testing, whereas several studies of large families with known breast cancer mutations found test uptake of 35 to 43 percent. Perhaps the most interesting and robust studies on psychosocial aspects of genetic testing find that it’s the meaning we make of these data, not the data themselves, which affects how we respond and what we do about it. As psychotherapists, that’s our territory—meaning-making, identifying trangenerational patterns of coping with illness, and coping with uncertainty.

Genetic testing raises issues about identity and the definition of health and illness. Is someone who tests positive but has no symptoms “healthy” or “sick?” Some pediatric literature has documented concerns about parents who have difficulty viewing their child as healthy after the child tests negative. Much to the frustration of many physicians, data don’t always drive beliefs. Incorporating beliefs about health, illness, and risk into a person’s identity in a way that strengthens a sense of agency and communion is an important task for medical family therapy.

The issue of transgenerational transmission of genetic material is complicated and profound. In another collaboration with medical geneticist Peter Rowley, Jenny Speice and I conducted large sessions with a family at risk for one of the rare colon cancer genetic mutations. Multiple members of this family had died from or were surviving colon cancer. The early sessions were imposing, with as many as 37 family members present, ranging in age from 15 to 75.

In the first session, family members came to hear about this colon cancer gene, what it means, and whether they should be tested. After lectures about the mutation and the potential outcomes of testing from the geneticist and the genetic counselor, we focused on the individual and family coping styles that had evolved in this family with an apparent history of genetic illness, as well as the decisions that faced family members who had yet to get sick or be tested. We discussed health beliefs and superstitions, so of which were a little odd. For example, some family members believed that the mutation, and the cancer, would hit every other sibling, or those with a crooked pinky. These beliefs generated laughter, but underneath it was the sense that any belief that allowed some sense of control in this scary situation might be a good one.

The family had the usual range of defenses, but all agreed that they’d coped successfully with having cancer and with being at increased risk for future cancers. What caused the most extreme distress and heartbreak was the idea that they might pass along an increased risk for cancer to their children.

As can occur in medical family therapy, there also emerged a link between deciding about testing for the mutation and reexperiencing memories of early physical abuse. The father in this family of eight children died at age 34 of colon cancer. A traveling salesman, he often drank at home. His children remembered the beatings they’d received when he was drunk. Using a blunting style of coping with illness, the father had refused to see a doctor about his symptoms until he was in the terminal stages of his illness.

Discussion of genetic testing caused a split among the adult children, who were all in their late forties and fifties. One group advocated strongly for testing, saying they must avoid their father’s mistakes and gather as much health information as possible. Another group believed that testing would “stir up the past” and wasn’t necessary if they continued appropriate surveillance behaviors. The family got into heated debates about the effect of these decisions on each other, their children, and their grandchildren.

Some family members felt that test results, or even the decision to be tested, should be private information. Other family members felt it imperative to share information about test results. “What do I do? Not ask you if you were tested or what the outcome was? I’ll worry endlessly.” Family members also debated the “correct” age for their children to decide about testing. Should they be burdened by this while in college? Should they be protected? All points of view were represented. Some felt they should reach consensus as a family about an approach, others felt diversity of opinion and behavior was inevitable.

Two of the women entered individual psychotherapy to work through their anger related to their father’s physical abuse of them, their own and others’ decisions about whether to be tested, and family communication. Both tested positive, which added to the grief and sense of abuse visited by their father. However, psychotherapy allowed each of them to find her voice and her anger, and move through this crisis to a place of understanding and forgiveness, grief, and finally acceptance. As occurs frequently in medical family therapy, genetic testing opened up a spectrum of unresolved emotional and interpersonal issues and ultimately led to personal growth.

The Ideal: Genetic Health Care Teams

A 21st-century biopsychosocial approach to genetic conditions requires a collaborative genetic health care team. Too often, clinicians—primary care physicians, therapists, specialists—function in isolation from each other, leaving patients and families to carry information back and forth among different professionals, and resolve conflicting professional opinions on their own. By contrast, a collaborative professional health care team provides not only more effective care to families, but mutual feedback and support to the other members of the team.

Family therapists understand how to work at different levels of the system—from the individual to the couple to the family and the health care team. These skills are invaluable and humanizing in a health care system too often focused on one organ, pressured for time, and driven by the bottom line. We must return to the roots of family therapy—to the work of pioneers such as Salvador Minuchin, Lyman Wynne, and Murray Bowen, who all believed that family-systems theory would revolutionize the understanding and treatment of mental and physical health problems. To implement a biopsychosocial systems approach to genetic health care, we must be conceptually creative, clinically innovative, and actively engaged in research. We must work together to find common ground with our patients, their families, and our health care colleagues. As Steven Seagle said in his 2004 graphic novel illustrated by Teddy Kristiansen, It’s a Bird, about a comic-strip author whose family had Huntington’s disease, “Like Superman, we have hurdles, but as long as we keep jumping them . . . we’re still in the race.”

Resources

McDaniel, Susan H. “The Psychotherapy of Genetics.” Family Process 44, no. 1 (March 2005): 25-44.

McDaniel, Susan H., Jeri Hepworth, and William Doherty. Medical Family Therapy: A Biopsychosocial Approach to Families with Health Problems, 2nd edition. New York: Basic Books, forthcoming.

Miller, Suzanne M., Susan H. McDaniel, John S. Rolland, and Suzanne L. Feetham, eds. Individuals, Families, and the New Era of Genetics: Biopsychosocial Perspectives. New York: W. W. Norton, 2006.