Expert Commentary by Julie A. Rousseau, MS, CGC
Julie A. Rousseau, MS, CGC
Division of Medical Genetics
Childrens Hospital Los Angeles
4650 Sunset Blvd., Mailstop #90
Los Angeles, CA 90027
Ph: 323.361.4743
Fax: 323.361.1172
Pager: 213.203.1392
jrousseau@chla.usc.edu
www.CHLA.org
Pedigree and Family History: Genetic Counseling a Lesbian Couple
Research into lesbian health began in the 1980s with The National Lesbian Health Care Survey and similar studies conducted in various cities and states across the United States. Such surveys have outlined discrepancies in health risks and utilization of health care services between lesbian and heterosexual women. Most studies to date have focused on barriers to health care, including homophobia on the part of providers and lack of health insurance coverage. These factors have been shown to diminish health care seeking behaviors among lesbians. Additionally, a large proportion of lesbians feel unable to disclose their sexual orientation to health care providers and those who do not feel comfortable disclosing this information are less likely to seek health care than those who do disclose this information.
Lesbian couples are increasingly deciding to co-parent by conceiving through use of donor sperm; however, only limited research has addressed the impact on prenatal care or genetic counseling. As the case study describes, there are a number of factors to consider with regards to determining how to approach a lesbian couple in a genetic counseling appointment. We can derive some generalizations and suggestions from information available addressing the use of appropriate terminology and documentation of disparities in health care provision in this population, though many answers will continue to differ based on philosophical differences in the approach to the provision of genetic counseling and risk assessment, as well as organizational standards.
The author of the case study above outlines very nicely the necessity of creating an open environment for disclosure of sexual orientation, from inclusion of open language on an intake form if one is used to using the appropriate terminology in conversation. As with any appointment, the use of open-ended, unassuming questions will create this environment and make it more likely that an individual will disclose his/her sexual orientation. Use of questions such as “what is your relationship to …?” is effective for any setting in which two or more people are present at the appointment, including adoptive parents, a new male partner who is not the biological father of a pregnancy or child, and same-gender couples. Once it is determined that a donor was used, whether it be an oocyte and/or sperm donor, the question “what is the reason for using a donor?” is open and unassuming, allowing an individual to respond about medical and/or social reasons. Then, as is clearly described in the case study, the language used by the genetic counselor should mirror that used by the individuals attending the appointment.
When I conducted my master’s thesis research on this topic, I surveyed genetic counselors in an attempt to determine whether or not there was consistency with respect to the manner in which a pedigree was obtained and drawn for lesbian couples during a prenatal consultation. At that time, while a number of respondents expressed an interest in eliciting the family history of the non-pregnant partner, this was not universal, nor was accurate nomenclature used despite the availability of the Recommendations for Standardized Human Pedigree Nomenclature. However, this discrepancy was at least in part explained by a difference in philosophy about the definition of “patient” and whether this includes the fetus, the pregnant woman, or the couple. This continues to differ between genetic counselors and institutions, such that the family history of a non-biological parent is elicited in some settings and not in others, including in the case of same-gender parents, adoption, etc. If the goal is to obtain family history that will relate to genetic risks only for the fetus or child, obtaining that of non-biological parents isn’t relevant. If the goal is to obtain family history that will relate to genetic risks for anyone in the immediate family, obtaining that of the non-biological parents is relevant.
As illustrated in the case study, there are multiple techniques used by lesbian couples to conceive. The comments of several genetic counselors in my research suggested a misconception regarding these options, such that lesbian women use only in vitro fertilization. Sexual orientation does not preclude fertility and, given the financial and medical implications of in vitro fertilization, many couples will use donor insemination to conceive. In vitro fertilization is typically used when other methods of conception have failed, as it is for heterosexual women, or when one partner will carry a pregnancy conceived using an oocyte from the other partner in order to allow both women to have an intimate connection to the pregnancy.
As described in the case study, we each must explore our feelings and opinions with regards to any number of different family structures and personal beliefs. While we may not be entirely comfortable with a given belief or family structure, we need to find a way to best advocate for that patient and use appropriate language. The direction we take and words that we choose will depend on each individual patient as experiences are different despite the impression that there is a single lesbian culture. With respect to the family history, until or if standard recommendations are created to address the question of who the patient is and whose history to obtain, we will each individually and as institutions need to decide what is appropriate for our patient population and be consistent.
References:
Bennett RL, Steinhaus KA, Uhrich SF, O’Sullivan CK, Resta RG, Lochner-Doyle D, Markel DS, Vincent V, Hamanishi J. (1995) Recommendations for standardized human pedigree nomenclature. Am J Hum Genet. 56: 745-752.
Bennett RL, Doyle DL, French KS, Resta RG. (2008). Standardized human pedigree nomenclature: update and assessment of the recommendations of the National Society of Genetic Counselors. J Genet Couns. 17(5): 424-433.
Buchholz SE. (2000) Experiences of lesbian couples during childbirth. Nursing Outlook 48: 307-311.
Carroll N. Women’s health concept to reality. (1999) Outlook; 4-8.
Ground-breaking lesbian health research agenda. (2001) Outlook; 8-9.
Parkhurst E. (2001) Genetic counseling and donor insemination: a study of prenatal care satisfaction. J Genet Couns. 10(6): 499.
Powers D, Bowen DJ, White J. (2001). The influence of sexual orientation on health behaviors in women from Prevention Issues for Women’s Health in the New Millennium. Binghamton, NY: Haworth Press. 43-60.
Werner C, Westerstahl A. (2008) Donor insemination and parenting: concerns and strategies of lesbian couples. A review of international studies. Acta Obstet Gynecol. 87: 697-701.
Julie Rousseau is a 2002 graduate of the Sarah Lawrence College Human Genetics Graduate Program, where her thesis was titled “Lesbian Couples: A framework for genetic counselors: survey of genetic counselors indicating a need for exploration into standardization of treatment.” She is currently working as a pediatric genetic counselor at Childrens Hospital Los Angeles, though she has experience in many clinical areas of genetic counseling. She has been a clinical supervisor for students from a number of genetic counseling training programs and works closely with medical students and residents during their Medical Genetics rotations.
