Dr Kerstin Stieber Roger
INTRODUCTION
This paper examines how family relationships are influenced by genetic diagnoses for adult onset health conditions, and, it reflects on the ways in which psycho-social factors affect a family’s application of such a diagnosis. This paper will reflect on the way in which different groups of people have ‘access’ to genetic information according to wide ranging social and cultural norms, and, how their interpretation of genetics can be understood in the context of psychotherapy. This paper examines the view that a genetics diagnosis is definitive by reflecting on psycho-social factors shape the responses associated with a person’s interpretation and daily experience of a familial health condition. The conditions include Huntington’s, some forms of Alzheimer’s, breast cancer, ALS, diabetes, and colon cancer. Generally, however, my focus is on families where a member has been positively diagnosed for Huntington’s.
Over 300 articles published since 2000 were reviewed examining a wide range of defining ‘access’ to the language of genetics and the impact of genetic testing on families in North America. Each article included either the focus of family and/or the focus of psychotherapy. The conditions for focus were selected based on i. a known genetic component that, ii. could be diagnosed in more than one family member in adult life, and, iii. included significant health impacts on the daily life of a family with possible variation in expression and symptomology between members. My own work as a psychotherapist for over six years in private practice in downtown Toronto as well as ten years (and ongoing) work in community-based organizations with people with Huntington’s Chorea informs this paper.
SECTION I: GENETIC TESTING AND PSYCHOTHERAPY
With the advent of genetic testing for familial health conditions, a process and a tool exists that families can use to test for, select from, and project a wide range of future possibilities. These new genetic diagnoses point to an historic communication about the body, social determinants, and health. As in any medical arena, genetic diagnoses are also interpreted by its users through daily practices and norms, organizational and social values and patterns, and institutional histories. While medical knowledge and diagnosis are taken seriously, personal and social factors deeply inform the way a person responds to a given familial condition.
In the context of genetics, the scientific dialogue begins to shape not only perceived possibilities and limitations for the body, but it also demarcates a way of examining the relationship of ‘family’ and the daily practices that are contained within it. In particular, counseling becomes a site through which the person enters into, acquires knowledge about, and becomes an expert in the language of genetics. In the counseling process, scientific terms, data and norms interplay discursively with people’s personal hopes, wishes, and fears and the social values they hold true. This process invites individuals to begin to define their family and its daily practices in particular ways.
In this vein, counseling for familial health conditions assumes both a presence within the world of science as well as a presence within the world of social science. Communication about physical symptoms, monitering how clients are handling the diagnostic process, managing people’s expectations of the future, discussing personal relationships, as well as the flow of facts and information about genetics all become a new knowledge base and linguistic sphere that encompasses the family. Genetics is brought to life for the person and discussions with the counselor mediate between their personal experience and knowledge about their bodies and family members experiences and the proposed expert language of science. Counseling as a linguistic and informative site of knowledge acquisition creates an opportunity to become an expert on the body, on ability and disability, the identity and status of ‘family’.
The primary theoretical model of counseling is generally one of non-directiveness although Emery (2001) and Kessler (2001) suggest that this does not always serve the family well. Decisions that are made about a possible genetic test are often multiple and sequential and most information in genetic counseling is based on probabilities and often uncertainty about outcome.
That social values unavoidably underlie the articulation of risks and benefits of genetic testing must be made explicit. Despite the best efforts of a counselor to convey "value neutral" facts, risk assessment by the counselee and family is done according to a normative analysis within the context of their family, their experience with illness, and gendered as well as cultural definitions of health. In the expression of genetic risks, the authority of the medical language itself is impacted by a person's interpretation and understanding of genetic information and data.
For example, Caroline tested positive for Huntington’s Chorea at the same time that her marriage of ten years had been having serious difficulty. While she was relieved on the one hand about the diagnosis in that it explained some her experiences, the diagnosis also lead to fear that with this definitive information she would now be abandoned by her husband. She interpreted the diagnosis to mean that she would ‘be’ the exact way her mother had been and fear of abandonment became more relevant to her process than looking at the realm of possible expressions of her diagnosis. Their relationship had experienced tension, depression on both sides, and regular periods of separation. Carl did leave her for several months after the diagnosis and in that period needed to face his own diagnosis of diabetes Type I. Their parallel diagnoses led each to seek more health care information and counseling about their conditions. Carl returned to Caroline eventually and they resumed their relationship after he had also become more educated about Huntington’s Chorea. Working with them to better understand how they each interpreted this diagnosis was critical to their relationship and future well-being together.
In this way, definitions of family, explicit family histories, and current family connections always come to the foreground after a diagnosis. Families may have already obtained access to previous genetic diagnosis, tailored medical management, crisis interventions, family therapy or individual psychotherapy. Counseling the whole family is critical in working with each of these concerns. Zallen (1997) reports that families have often developed ‘special names identifying family problems…nicknames for illnesses abound because they are simpler to say than official medical term[s] and sound less frightening’ (p. 49). A social service professional can be helpful in introducing new terms and concepts that put a frame around a given condition as it is understood by a family (Mahowald, 2001, p.159). A diagnosis often does offer initial relief in that clients gain some clarity for confusing symptoms, it provides opportunities for management of emotions and possibly decreasing negative symptoms, it allows a family to prepare for future financial possibilities, and it can provide more information for health care professionals and researchers in determining links, causes, and cures for genetically based conditions.
On the other hand, a genetic diagnosis can create diagnostic unknowns -- as with Caroline --, survivor guilt in those who do not test positive, anxiety and fear for those who do, and conflicts between family members. It can presume outcomes which are uncertain and set forth a template for symptoms which will either never emerge, or, secondly, will be revised as research finds cures and solutions for them. Professionals working with family members must communicate not only the possible genetics impact, but also be able to articulate the ways in which research, social change, and personal growth can emerge from a diagnosis. Mahowald (2001) stresses that by focusing a therapy session primarily on biological uncertainties a family may not have their full spectrum of needs met. The practice of value-neutrality in counseling is in competition with other lived cultural norms and social values about health, illness and family. It is the task of the effective professional to ensure that lived experiences of families with genetic conditions take into account a wide range of interpretations and opportunities not limited by the description of the genetic diagnosis. Understanding genetics can also contribute to the social service provider’s effectiveness.
SECTION II: GENDER AND CULTURE IN PSYCHOTHERAPY
Gender
It has been well-documented in the general counseling literature that gender enters into the counseling relationship shaping not only its process but also its outcome (Goldhor-Lerner, 1988; Helms, 1984; Littlewood, 1992; Pinderhughes, 1989). Gender is implicated in the genetic counseling process in a number of ways that reflects the status of sex (ie. being female), but more importantly for my focus, gender reflects one of the ways in which social norms and social identity contribute towards the interpretation of genetics and the decisions that are made within a genetics context. Mahowald (2001) summarizes the difference between these two by listing the following issues:
For example, Beth had worked through the diagnosis and rapid deterioration of her husband’s Huntington’s Chorea and had become his primary caregiver by mid-life prior to his entering a care home in his 50’s. One of their married sons, who had two young boys, was also diagnosed with Huntington’s in his early thirties although he was not yet showing symptoms. Beth began to depend more on her only daughter and she explains that their relationship deepened as the women realized that the gene for Huntington’s in their family was carried through the male side. Beth divulged to me that her husband’s regular aggressive outbursts were difficult to manage, and that she feared watching her son go through the same experiences. Her experience led her to conclude that men with Huntington’s are more violent than women with Huntington’s. It also led to a much more substantial connection with her daughter. This reflects what the literature states about attachment and women, and it suggests that more research linking gender and family experiences of genetics is critical. In this way, Brookes (2001) determined in the context of genetic testing that the question of ‘care’ and ‘care-giving’ be framed in relation to women’s daily lived experiences. How central is care to women's decision-making processes either about their own decision to test, or, in relation to decisions associated with other family member’s testing process?
According to Carol Gilligan (1982), women make decisions about moral conflicts by reflecting on relational factors rather than principles or statements about justice. The value of her now historical work is that it asked us to critically theorize about the gendered role of care (as she calls it the ‘ethics of care’) in the context of genetic diagnosis. Gilligan asks those of us working in the area of psycho-social impact of genetics, how such an analysis can be a useful tool in families where more than one person is at risk or has been diagnosed with a familial condition. Do caregiving practices change? How? What decisions do women make similarly or differently to men?
Clearly, the type of condition being diagnosed may impact the analysis in particular ways. For example, women with breast cancer in their family will relate to their female members one way; the high rate of women being diagnosed with Alzheimer’s across groups will reveal new questions about gender there; a family where the men are all diagnosed with Huntingtons and the women are the survivors suggest new questions that will emerge when gender is taken into account in that situation. Certainly, in one family with ALS, where the female siblings discovered two had inherited ALS, a renewed sense of ‘sisterhood’ was formed.
d’Agincourt-Canning (2001) discusses that disclosure of genetic information is a highly contextual and gendered activity in any family. Her analysis on the basis of breast cancer points to the importance of understanding how disclosure about genetic health conditions depends on the maintenance and continuity of gendered relationships within a family. Her work states that we need to continue to define ‘perception of risk’ in terms of gendered roles within these families. In terms of dementia, Favart-Jordan (2002) helps us to understand that women play an important role in maintaining family memory through their story-telling and intimate conversations. In effect, she suggests that women participate in maintaining a kind of ‘culture of memory’ in families that is signified further as diagnoses for dementia take effect.
One of the most common methods of defining risk for chronic conditions has been to assess the age of women planning for pregnancy. Age affects the decision to have or not have an amniocentesis done particularly in women 35 years or older (Vergani, 2002). Predictable risk is perceived primarily on the basis of gender (being female), and age (being over 35). Risk is associated here with the female body as the primary site of the decision-making process. Yet, while ‘age’ has been specified at 35, women place this age-specific information in the context of personal belief frameworks of what they know about their bodies, their mothers experiences, and peers and friends.
In my own private practice as a psychotherapist, some women revealed to me that they disregarded both this age limit and the possible consequences of a genetic test based on their faith, personal definitions of disability, and life experiences; while other women feared the consequences of being the primary caregiver to a child who will become ill given what they understand to be a possible ‘bad’ test result. Ginsburg and Rapp (1995) have further noted how a gender analysis is implicated in decisions about genetics and reproduction. Their work reflects on the discourse that occurs within counseling sessions between the communication of a scientific diagnosis, the analysis of social norms, and a discussion about resources available to the woman or couple making the decision. They highlight existing social narratives about illness and disability, poverty and gender, and how these reflect women in a reproductive decision-making process.
Condit (1990) reveals that public accounts of discussions around abortion and women have historically not expressed the ‘full range and complexity of [their] individual lived experiences’. Choice, according to Condit, may primarily represent what is possible given social options available, as opposed to reflecting the parameters of a scientific diagnosis. A particular familial genetic diagnosis invites pregnant women into a reflection which must take into account multiple conditions, relationships, and, multiple stakeholders. Such a decision-making process is formalized in the context of the woman’s body, it is determined by how she qualifies her relationship to her spouse or family, and it is shaped by her beliefs and values about her own perception of risk. Multiple social and personal investments emerge in relation to how she interprets and understands the often new language of genetics in the counseling session.
Decisions made about genetics then can in part be framed on the basis of women’s bodies, their immediate relationships, social networks and professional lives. The availability of genetic testing (and resulting familial diagnoses) positions women within formal and informal care-giving sites where perception of risk, decision making processes, and confidentiality emerge as new indicators. Considering gender further in tandem with financial concerns, professional goals, roles at home and at work, the risk of overload, depression and stress are well known for those in multiple care-giving roles. While many benefits and joys are articulated in these care-giving roles, stresses emerge in particular ways for women when more than one family member has been diagnosed with the same genetic condition.
Culture and Ethnicity
Literature on counseling methods has also discussed the ways in which ethnicity or race emerges for families within a counseling process (Helms, 1984; Pinderhughes, 1989; Ponterotto, 1991;). This literature reveals how social status related to race or ethnicity can play a role in shaping the counseling process. An example of this would be the verbal and non-verbal cues that may emerge between a white English-speaking counselor and a non-white client whose first language is not English (Ponterotto, 1991). Or, the ways in which specific cultural cues and belief systems affect discussions, concerns, and values raised in a counseling process related to familial conditions. In this sense, the issue is not to focus on genetic conditions specific to particular ethnic groups, but to examine the impact of cultural norms on how people interpret a genetic diagnosis within a counseling session.
For example, Ellerby (1999) states that for Aboriginal families health is determined by traditional thinking about ethical decision-making where the terms and distinctions contained within a formal "bioethics" do not generally exist. For Aboriginal people, decision-making about genetics and their families is best understood as a process and not a correct interpretation of one scientific or unified code. Cultural norms are more highly esteemed and the scientific data is used primarily as a backdrop.
Daar and Khitamy (2001) describe that in Arab communities genetic disorders are still not perceived as a major health problem, even though they are widely prevalent. As well, they discuss that culturally specific familial structures must be integrated into counseling sessions.
In another family where the father and two sons were each diagnosed with Huntington’s, a Middle Eastern family I worked with over a long period of time, the role of the eldest son became significant in family decision making about the testing. First, his status as the eldest son led to conflict about whether he and his brother should test or not; second, upon receiving the results a conflict emerged whether the mother (who had already experienced Huntington’s in her husband) should be told about the two positive tests of each son based on the eldest son’s right to decide family maters; finally, when agreement was not found and the mother was told, the eldest son felt his power usurped and withdrew from the family to another city. It was upon his inability to live alone or care for himself that he returned to his family, continuing at this point with strong feelings about how he as the eldest son had been displaced within his rightful family role. The intensity of emotion and ongoing discussion about his role as eldest son appeared to emerge as part the evolving expression of Huntington’s.
In the case of dementia, these familial roles may become much stronger expressions within the context of the cognitive changes associated with conditions such as Huntingtons. Other family members are best in a position to work with traditional and cultural expressions that are familiar to them, but professionals working with cultural variations may be unable to uncode cultural norms signified even more strongly through family systems or as seen in the symptomology related to early stages of dementia.
Ilkilic (2002) states that the understanding of familial illness characteristic of Muslim Turks who came to Germany forty years ago is encrypted onto hopes for the German health care system. He describes their understanding of genetics as oral and cultural in meaning. His intention is to demonstrate that genetic results may not be taken seriously by some cultural groups who believe that a better and more evolved health care system can manage any kind of condition, including a genetic one.
Particular ethnic and cultural backgrounds play a role in the counseling process in that counselors might hear how families view an illness as a disgrace and stigma, or, as an important message from God and a quest towards strengthening a faith. How a family unites or has conflict on this basis is relevant in shaping future family relationships in the context of interpreting genetics.
SECTION III: FAMILY CONSTRUCTS
According to Beaujot (2000), rapid and dramatic changes in traditional family structures are occurring defined by increasing single parenthood, a rising rate of divorce, new regulations about same-sex couples, and more women than ever in the paid labor force. These changes in traditional family structures impact how people maintain relationships with their blood ties especially if genetic testing for a health condition emerges as critical into adulthood. Given these new experiences of family, it is of particular interest how genetics may now be interpreted or shape family experiences.
Moss (2001) states that decisions made in families on the basis of genetic test results are different than other medical decisions due to the specific and unique character of a genetic predisposition and its possible impact on a family.
Certainly, in my work with a range of family members, a genetic test highlights very unique and dramatic family themes as I did not witness with other families. Levels of emotion and ability to cope with genetic test results generally are expressed through long lasting family relationships and histories all of which may be positive or negative. Moss goes on to say that the exact outcome of a genetic diagnosis should still be seen as experimental and someone at high-risk may or may not express symptoms in a predictable or meaningful way. Yet, the news of any genetic diagnosis, whether accepted literally or in a skeptical manner, shapes a whole family as no other diagnosis can. As well, issues in the context of family reflected in the media now include issues of heredity as these relate to adoption and family, families created through selected artificial insemination, estates and inheritances and living wills.
Issues for psychotherapy or the community-based social worker may include working with family members who are affected by one member’s testing process whether they test positive or not, and whether they accept a diagnosis or not. Lerman (1997) discusses how family members may be touched by ‘survivor guilt’ when they do not test positive and these need attention in counseling as much as those who have tested positive. On the other hand, issues related to grief, loss, and despair may be integral to the work of the counselor as well as concerns about care-giving, health care, and finances. Prior to a diagnosis, trauma (or PTSD) or a variety of irregular behaviors may already have become the primary narrative of a family clarified now subsequent to diagnosis. How trauma is maintained (or intensified) within a family post-diagnosis can be important work for therapy.
I found that families with Huntington’s had a long standing history of relational conflicts, sometimes violence, and usually traumatic events (ie. car accidents, sexual idiosyncracies, other unusual behavior) that a genetic diagnosis now allowed them to name and place into a more comfortable narrative and sequence. The knowledge that accompanies a diagnosis can be healing and have profound effects on the emotional health of a family system. Relief is also noted in families where depression and mood swings may be central to a familial condition. As Kubler-Ross defined for us in stages to accepting death, multiple processes must be examined in the stages that define the acceptance that occurs in families after results of a genetic diagnosis are provided.
Typical questions that all family members may face when engaging in a genetic counseling situation for a genetically based condition include (Mahowald, 2001):
As noted by Codori (1997), counseling can help a family member engage in realistic expectations so that a wide range of possible outcomes of a diagnosis are not only introduced but encouraged. A diagnosis may infer to one individual that they will inevitably express the same symptoms another family member does, and this myth must be dispelled. Suicide rates can be reduced, and depression managed more effectively. In the example of my work with people with Huntingtons, it has been useful to explore the wide range of symptoms and expressions within one family so that the daily lived experience of any diagnosis can be interpreted as openly as possible. Since research is always evolving, this is most important.
In this regard, understanding the many ways in which social resources, professional aid, and personally fulfilling relationships can alter the outcome of a diagnosis is part of the professional responsibility of the counselor. Certainly, access to health care, social services, and informative aids can dramatically affect any condition. Equally, strong friendships, community, and family relationships will positively impact a condition as well. In the ongoing pursuit of genetics research, we can keep in mind the impact of social factors on constructing the daily lived experience of a familial health condition.
One of the most moving relationships I experienced was discovering that two siblings into mid-stage expressions of Huntington’s developed a way to resolve a life-long conflict and continued to relate in a warm manner towards each other. In this way, realizing that positive change in families can happen late into onset is a good example and professional challenge for counselors.
A counseling discussion can shift uneasily between the emotions and social dynamics of a condition versus the misconceptions or fears that people carry about what ‘genetics’ really means to them. In the example of Huntington’s, younger generations may associate their own diagnosis with generating the same symptoms as a parent. On the other hand, they may also be looking to the near future where a cure may be at hand. In this sense, the language of genetics can be a most valuable tool to families when understood within a paradigm of familial variation and social influence. The counselor will shape these experiences for a client family and this relationship can become a significant factor in shaping the experience of genetics.
Conclusion
The advent of testing for familial health conditions on the basis of genetics asks us to reflect on how these new diagnoses will further shape a family’s relationships. Families may take on new practices, relations, and meaning as a family interprets genetics within its own personal and socially based experiences. In this sense, we must understand the extent to which a diagnosis of any kind, but specifically genetic, implicates social factors as in the example of family relationships, social status, environmental concerns, and other economic or political factors. IN this sense, a diagnosis is reflexively dependent on the discourses that shape and impact upon people’s behavior. Knowing this will provide more meaning and depth for those families that think and reflect on the value of a genetic diagnosis in their familial context.
BIBLIOGRAPHY
Albrecht, G., Seelman, K., Bury, M. (2001). Handbook of Disability Studies. London: Sage Publications.
Armstrong, P., Amaratunga, C., Bernier,J., Grant, K., Pederson, A., Willson, K. (eds.). (2001). Exposing Privatization: Women and Health Care Reform in Canada. Ontario: Garamond Press.
Basen, G., Eichler, M., Lippman, A. (1993). Misconceptions: The Social Construction of Choice and the New Reproductive and Genetic Technologies. Quebec: Voyageur Publishing.
Baum, A. (1997). ‘Stress and Genetic Testing for Disease Risk’, Health Psychology, 16 (1), pp. 8-19.
Beaujot, R. (2000). Earning and Caring in Canadian Families. Peterborough, ON: Broadview.
Brookes, A. (2001). ‘Women's voices: prenatal diagnosis and care for the disabled’, Health Care Anal., 9(2), 133-150.
Bunn, J.Y., Bosompra, K., Ashikaga, T., Flynn, B.S., and Worden, J.K. (2002). ‘Factors influencing intention to obtain a genetic test of colon cancer risk: a population-based study’, Prev. Med, 34(6), 567-577.
Cassidy, D.A. (1998). ‘Factors perceived to influence parental decision-making regarding presymptomatic testing of children at risk for treatable adult-onset genetic disorders’, Issues Compr Pediatr Nurs, Jan-Mar;21(1):19-34.
Chodorow, N. (1989). Feminism and Psychoanalytic Theory. New Haven: Yale University Press.
Codori, A.M. (1997). ‘Predictors of Psychological Adjustment to Genetic Testing for Huntington’s Disease’, Health Psychology, 16(1), pp. 36-50.
Condit, C. (1990). Decoding Abortion Rhetoric: Communicating Social Change. Urbana: University of Illinois Press.
Cox, S. 1999. ‘There’s this thing in our family’: Predictive Testing and the Construction of Risk for Huntington’s Disease’, Sociology of Health and Illness, 21 (5), pp. 622-646.
D’Agincourt-Canning, L. (2001). ‘Experiences of genetic risk: disclosure and the gendering of responsibility’, Bioethics, 15(3):231-47.
Daar, A., and Khitamy, A. (2001). ‘ A Muslim Interpretation of Genetics’, Canadian Medical Association Journal, 164 (1).
Dickens, B. M., Pei, N., and Taylor, K. M. (1996). ‘Legal and ethical issues in genetic testing and counseling for susceptibility to breast, ovarian and colon cancer’, CMAJ, 154(6), 813-818.
Ellerby, J. (1999). Working with Aboriginal Elders. Winnipeg: Earth Concepts.
Emery, J. (2001). ‘Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper’, Health Expect., 4(2), 81-86.
Favart-Jordan, E. (2002). ‘Women’s Family Speech: A Trigenerational Study of Family Memory’, Current Sociology, 50 (2), pp. 309-319.
Gilligan, C. (1982). In a Different Voice. Cambridge: Harvard University Press.
Ginsburg, F. and Rapp, R. (Eds.) (1995). Conceiving the New World Order: The Global Politics of Reproduction. Berkeley: University of California Press.
Goldhor-Lerner, H. (1988). Women in Therapy. New York: Harper and Row.
Gove, W. (1979). ‘Possible Causes of the Apparent Sex Differences in Physical Health: An Empirical Investigation’, American Sociological Review, 44 (2), pp. 126-146.
Grosfeld, F., Beemer,F. Lips, C., Hendriks, K., Kroode, H. (2000). ‘Parents’ responses to disclosure of genetic test results of their children’, Am J Med Genet, 94(4): 316-23.
Helmes, A.W., Bowen, D.J., and Bengel, J. (2002). ‘Patient preferences of decision-making in the context of genetic testing for breast cancer risk’, Genet. Med., 4(3), 150-157.
Helms, J.E. (1984). ‘Towards a Theoretical Explanation of the Effects of Race on Counselling: A Black ad White Model’, The Counselling Psychologist, 12 (4), pp.153-165.
Ilkilic, I. (2002). Why Muslims and Doctors do not understand each other. Doctoral Thesis: Bochum, Germany.
Jordan, J. (1991). Women’s Growth in Connection. New York: Guilford Press.
Kaufert, P. (2000). ‘Health Policy and the new genetics’, Social Science and Medicine, 51, pp. 821-829.
Kessler, S. (2001). ‘Psychological aspects of genetic counseling: Non-directiveness and counseling skills’, Genet.Test., 5(3), 187-191.
Krantz, C. (1997). ‘Psychological Aspects of Genetic Testing: Introduction to the Special Issue’, Health Psychology, 16(1), pp. 3-7.
Lerman, C. (1997). ‘Psychological Aspects of Genetic Testing: Introduction to the Special Issue’, 16(1), pp. 3-7.
Leroi, I. (1998). ‘Treatment of the Psychiatric Manifestations of Huntington’s Disease: A Review of the Literature’, Can J. Psychiatry, 43 (11), pp. pp.933-940.
Lindblad, A. (2001). ‘To test or not to test: an ethical conflict with presymptomatic testing of individuals at 25% risk for Huntington’s disorder’, Clin. Genet. 60(6):442-6.
Littlewood, R. (1992). ‘How universal is something we can call therapy?’ in, Kareem, J., (ed.). Intercultural Therapy: Themes, Interpretations, and Practice. Oxford: Blackwell Scientific Publications.
Mahowald, M., McKusick, V., Scheuerle, A., Aspinwall, J. (2001). Genetics in the Clinic: Clinical, Ethics and Social Implications for Primary Care. London: Mosby Publishers.
Malinowski, M. (2001). ‘Commercialization of Predictive Genetic Testing’. In M. Mahowald, V. McKusick, A. Scheuerle, and T. Aspinwall (Eds.) Genetics in the Clinic: Clinical, Ethical, Social Implications for Primary Care (pp. 209-219). St. Louis, Missouri: Mosby.
Merrill, S. (1997). ‘Gender Differences in the Comparison of Self-Reported Disability and Performance Measures’, 52A (1), pp. M19-M26.
Miller, J.B. (1976). Toward a new psychology of women. Boston: Beacon Press.
Moss, R. (2001). ‘Genetic Testing as a Family Affair’. In M. Mahowald, V. McKusick, A. Scheuerle, and T. Aspinwall (Eds.) Genetics in the Clinic: Clinical, Ethical, Social Implications for Primary Care (pp. 209-219). St. Louis, Missouri: Mosby.
Munn, M., Skinner, P. O., Conn, L., Horsma, H. G., and Gregory, P. (1999). ‘The involvement of genome researchers in high school science education’, Genome Res., 9(7), 597-607.
Oduncu, F.S. (2002). ‘The role of non-directiveness in genetic counseling’, Med Health Care Philos., 5(1), 53-63.
Parker, M. (2001). ‘Genetics and the interpersonal elaboration of ethics’, Theor.Med Bioeth., 22(5), 451-459.
Pederson, P. (1987). Handbook of Cross-cultural Counseling and Therapy. New York: Praeger Publishers.
Penning, M. (1994). ‘Gender Differences in Disability, Assistance, and Subjective Well-being in Later Life’, Journal of Gerontology: Social Sciences, 49(4), pp. S202-S208.
Pinderhughes, E. (1989). Understanding Race, Ethnicity and Power. New York: MacMillan Inc.
Ponterotto, J.C. (1991). Handbook of Racial/Ethnic Minority Counselling Research. Springfield: Charles Thomas.
Razack, S. (1995). ‘From Consent to Responsibility:Subtexts in Cases of Sexual Violence involving Girls and Women with Developmental Disabilities’. American Bar Foundation, pp.891-922.
Rentmeester, C. A. (2001). ‘Value neutrality in genetic counseling: an unattained ideal’, Med Health Care Philos., 4(1), 47-51.
Roger, K. (1998). ‘Fairy Fictions: White women as helping professionals’. Doctoral thesis: University of Toronto.
Sarangi, S. and Clarke, A. (2002). ‘Constructing an account by contrast in counselling for childhood genetic testing’, Soc.Sci.Med, 54(2), 295-308.
Sarason, B., Duck, S. (2001). Personal Relationships: Implications for clinical and community psychology. Publisher?
Shepherd, M., Ellis,I., Ahmad,A., Todd,P.J., Bowen-Jones, D., Mannion, G., Ellard,S., Sparkes, A.C., Hattersley, A. (2001). ‘Predictive genetic testing in maturity-onset diabetes of the young’, Diabet Med, 18(5):417-21.
Speice, J., McDaniel, S.H. Rowley, P.T. and Loader, S. (2002). ‘Family Issues in a psycho-education group for women with a BRCA mutation’, Clin.Genet., 62(2), 121-127.
Stoppa-Lyonnet, D. (1997). ‘Genetic predispositions to breast cancer’, Press Med, 26(40).
Tessaro, I., Borstelmann, N., Regan, K., Rimer, B. K., and Winer, E. (1997). ‘Genetic testing for susceptibility to breast cancer: findings from women's focus groups’, J.Womens Health, 6(3), 317-327.
Tibben, A. (1997). ‘Three-Year Follow-up after Presymptomatic Testing for Huntington’s Disease in Tested Individuals and Partners. Health Psychology’, 16(1), pp. 20-35.
Vergani, P., Locatelli, A., Biffi, A., Ciriello, E., Zagarella, A., Pezzullo, J. C., and Ghidini, A. (2002). ‘Factors affecting the decision regarding amniocentesis in women at genetic risk because of age 35 years or older’, Prenat.Diagn., 22(9), 769-774.
Williams, J.K., Schutte, D.L., Evers,C., Holkup, P.A. (2000). ‘Redefinition: coping with normal results from predictive gene testing for neurodegenerative disorders’, Res Nurs Health 23(4):260-9.
Zallen, D. T. (1997). Does it Run in the Family? New Jersey, NY: Rutgers University Press.
Kerstin Stieber Roger, PhD.
Department of Family Studies
35 Chancellor’s Circle, University
of Manitoba
Winnipeg Manitoba Canada R3T 2N2
Phone: 204-474-9033
Email: rogerk@ms.umanitoba.ca
Copyright the Author