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Learn More. Individuals who have, or are at risk for, various genetic disorders face many challenges concerning disclosures of genetic information in dating situations. At times, these individuals feared and experienced rejection, and hence delayed, avoided, or opposed disclosure, or disclosed indirectly or inadvertently.
This paper, the first to explore several key aspects of disclosures of genetic information in dating, thus suggests needs for public and professional education, and future research in this area. Yet, little attention has been given to disclosures of genetic information in these contexts—what challenges patients face, and how they approach these.
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We recently conducted an in-depth qualitative study, exploring the research questions of what issues individuals who had or were at risk of a genetic disease faced, and how they viewed and addressed these—including issues of understandings, privacy, and disclosures of genetic information. We explored disclosure to various groups of individuals e. Participants also often described struggles with disclosure decisions in a key additional context—dating situations.
Specifically, interviewees explained how they and their adult family members, friends, and fellow patients e. Disclosure in dating was not the primary initial research focus of this project, but emerged in the course of the data collection and analysis.
Since qualitative research methods allow the investigator to probe areas as they arise within and between interviews, we then explored these areas further. Disclosures of genetic information in dating situations have received a small amount of attention in film Rudnickand Hoskins et al. We have found no other published studies that focus on disclosures of genetic information in dating situations, though prior research has probed other areas that may be indirectly related: disclosures of genetic information in non-dating situations e.
Yet, as we shall see, disclosures of genetic information pose several unique challenges.
Disclosures of health information during dating have been examined with regard to HIV and other STIs, indicating that men and women often have difficulty disclosing their infection in these situations, wrestling with dilemmas of whether, when, what, and how to tell, and how to assess trust and levels of moral responsibilities to disclose Klitzman and Bayer These men and women frequently avoid or delay such disclosures, speaking in code or indirectly, or seeking to justify silence e.
Given the health risks involved in non-disclosure, laws mandating disclosure of HIV infection to sexual partners exist in several states Klitzman et al. Men and women with genital herpes are less likely to tell casual than non-casual partners Green et al. Those unable to find such accepting partners decrease their dating activities. Yet, HIV and dating STIs involve not just stigma, but potential transmission of the virus to the person one is dating, whereas genetics does not involve infecting the person.
Genetics can affect possible future children, but not all couples want to have children, and Preimplantation Genetic Diagnosis PGD can potentially prevent Huntington transmission of the mutation, though PGD can pose problems, too, as discussed below. The presence of ongoing health problems—but not initial disclosures of these—have also been examined marital dating among older adults i. But these studies have not examined how these individuals decide whether, when, and how to initially discuss their health concerns. Questions concerning disclosures about aspects of living with disabilities in relationships have also received attention, but have focused on the ways in which people with disabilities discuss assistance they may need e.
However, these studies have not examined initial disclosures of disabilities in dating situations.
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Moreover, many disabilities are visible or readily apparent e. Hence, disclosures of genetic risk or disease, which are generally invisible, can pose dramatically different issues. Several prior studies have explored other, psychosocial aspects of dating and spouse selection, examining socio-demographic differences in selection of prospective mates, focusing on age, race, social class Hollingshead ; Southand physical attributes such as weight, height Belot and Francesconiand attractiveness Li et al.
Disclosures of genetic risks have been explored within established families Wilcke et al. For HD, too, some individuals undergo testing to help make reproductive decisions Decruyenaere et al.
Generally, members of couples married 20—30 years disclose cancer diagnoses to each other Porter et al. But these studies have not examined how individuals confronting genetic disease approach disclosure decisions they face. Moreover, in the case of dating, families have not yet been formed. Individuals may thus simultaneously face challenges in adjusting to the possibility of genetic risk, while also working towards establishing a relationship, and considering the possibility of having children.
Researchers have explored, too, the process of premarital relationship development in general. Questions arise as to whether genetics affects these processes and models or vice versa, and if so, how.
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As suggested above, many questions persist concerning how exactly individuals broach the topic of genetic risk information in dating dating whether they discuss genetic information, and if so, when, to what extent, how, and with whom. We thus probed these areas Huntington they began to arise in the marital of interviews conducted as part of the larger study mentioned above. This paper examines these issues: what concerns these individuals face in this context, how they respond to these, and what implications these decisions have. We selected a heterogeneous group in order to more fully understand the range of issues and perspectives that could arise regarding genetic issues.
The Columbia University Department of Psychiatry Institutional Review Board approved the study, and all participants gave informed consent. As described below, the participants varied in age, relationship status, and presence or absence of children. All were heterosexual. To recruit participants, we distributed information about the study through clinics, studies at our institution, newsletters, flyers displayed on bulletin boards of our institution, and word of mouth. Individuals contacted the principal investigator if they were interested.
Testing and symptom status were by self-report except for those individuals confronting HD who were recruited through an HD clinic. With each participant, the PI conducted a confidential in-depth semi-structured interview concerning experiences of having, or being at risk for, disease. Hence, to understand more fully the range of factors and issues that may be involved in genetic testing decisions, we used qualitative methods. We have adapted elements from grounded theory, as described by Strauss and Corbinto aid in understanding a complex social process.
Specifically, grounded theory involves both deductive and inductive thinking, building inductively from the data to an understanding of themes and patterns within the data, and deductively drawing on frameworks from research and theories.
For example, interviewees introduced topics such as interactions on dates that were then explored further in these and other interviews.
This approach was marital by constant comparison in which data from different individuals were compared for similarities and differences to see whether these suggested hypotheses. Transcriptions and Huntington analyses of interviews were done during the period in which the interviews were being conducted and helped guide subsequent interviews.
Once the full set of interviews and initial analyses were completed, subsequent, more detailed analyses were conducted in two phases, primarily by the PI together with a research assistant Dating who had social science training. These two coders assessed similarities and differences among participants, examining themes and that emerged, ranges of variation withinand variables that may be involved. While reading the interviews, a topic name code was inserted beside each excerpt of the interview to indicate the themes being discussed.
The coders then worked together to reconcile their independently developed coding schemes into a single scheme, creating a coding manual, and examining areas of disagreement until reaching consensus.
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New themes that did not fit into the original coding framework were discussed, and modifications were made in the manual as needed. In the next phase of the analysis, we subdivided thematic into secondary or sub-codes, and then refined and merged these, when suggested by associations or overlap in the data. Codes and sub-codes were then used in analysis of all of the interviews.
Major codes or of text included, for example, occasions when participants disclosed their genetic risk in a dating situation.
Sub-codes or sub-themes were conceptual marital thematic subdivisions of these larger and included, for instance, reasons why the participant decided to disclose dating not disclose to a prospective mate. To ensure coding reliability, two coders analyzed all interviews. To ensure trustworthiness, we triangulated the data with existing theoretical and empirical literature related to disclosures of, and responses to, genetic and other diseases Hoskins et al. These data also have a certain face validity that, we would suggest, further substantiates their trustworthiness. We have also presented below text from the interviews to allow readers to judge these data for themselves.
Some interviewees articulated certain themes more clearly and succinctly than did others, and thus, given space limitations, are quoted more below. Overall, as illustrated in Fig. These decisions were shaped by several medical, social, and psychological factors, and have several implications e. This goal of avoiding stigma and rejection lead these individuals to wrestle with this series of questions. In brief, as described more fully below and outlined in Fig. Huntington chose to forego dating altogether, in part to avoid these dilemmas.
Factors shaping these decisions were medical e. Disclosures of mutations often exacerbated these challenges.
These are presented below within the framework of the series of questions with which these interviewees wrestled—i. Alternatively, one could potentially organize these data differently e. At the same time, these questions i. With each potential partner, a patient must answer each question, and these decisions usually affect each other. For example, what one decides to disclose can affect how one says it. When one decides to disclose can affect what one says.
Rather than break up these narratives, we have hence presented each below in reference to a particular phenomenon, and then refer back to them in exploring other phenomena to which they relate as well. Overall, each of these dilemmas is conceptually somewhat distinct, and thus examined separately here for purposes of elucidation. Individuals with Alpha tended to become aware of the disease later in life e.
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The diagnosis was first described in Laurell and Eriksonand before that, patients were usually misdiagnosed with emphysema. All of the interviewees confronting Alpha had symptoms and were receiving treatment intravenous Prolastin. While all participants felt that a clear obligation existed to tell the other person once one has definitively decided to get married, quandaries arose before this mutual commitment is firmly established. As a year-old woman with Alpha said.
A person is entitled to genetic privacy, except as it affects somebody else. Of note, questions arise of whether this obligation to tell is less if one does not wish to have children, and, if so, to what degree. Yet, dating—before individuals have decided to marry, or enter long-term, committed relationships—presents other complexities. In these situations, individuals face multiple questions, and are frequently unsure how to proceed. Individuals had to weigh competing pros and cons—for example, balancing ethical obligations against potential risks of rejection. Participants often debated what to do, weighing the long-term potential of the relationship vs.
A year-old single woman with breast cancer, who has a mutation and underwent a mastectomy, said:. Is this worth it? I dated men where it has come up very early on, and I realized this is not the person for me.
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Reactions to disclosure of genetic risk can thus serve as a test of the relationship itself. Moreover, the fact that one has the mutation can be compounded by the fact that one has had symptoms, and potential visible and scarring treatment i. Consequently, these factors can thus force individuals to consider the value i.