Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent

Abstract

Introduction: Diverse sex development (dsd) is an umbrella term for different congenital conditions with incongruence of chromosomal, gonadal, and phenotypic sex characteristics. These are accompanied by various uncertainties concerning health-related, medical, psychosocial, and legal issues that raise controversial discussion. Aim: The aim of this exploratory study was to investigate 3 questions: What are the most controversial and disputed issues in the context of intersex/dsd? Which issues are associated with the biggest knowledge gaps? Which issues involve the greatest difficulty or uncertainty in decision-making? A further aim was to investigate whether the group of persons concerned, the parents of intersex children, and the group of experts in the field had differing views regarding these questions. Methods: A self-developed questionnaire was distributed among persons concerned, parents of children with intersex/dsd, and experts in the field. It contained open and multiple-choice questions. The answers from 29 participants were entered into data analysis. A mixed-method approach was applied. Quantitative data were analysed descriptively. Qualitative data were analysed according to the principles of qualitative content analysis. Main Outcome Measure: Participants answered questions on the most controversial and disputed issues, issues associated with the biggest knowledge gaps, and issues associated with the most difficulty or uncertainty in decision-making. Results: The findings indicate that controversial issues and uncertainties mainly revolve around surgical interventions but also around the question of how to adequately consider the consent of minors and how to deal with intersex in the family. Significant differences were found between persons concerned and parents vs academic experts in the field regarding the perceptions of procedure of diagnostic investigation and/or treatment in adulthood, on legal questions concerning marriage/registered civil partnerships, and on lack of psychosocial counseling close to place of residence. Conclusion: The necessity of irreversible gonadal and genital surgery in early childhood is still a matter of strong controversy. To ensure the improvement in well-being of intersex persons, including a sexual health perspective, the positive acceptance of bodily variance is an important prerequisite. Psychosocial support regarding one-time decisions as well as ongoing and changing issues of everyday life appears to be an important means in reaching overall quality of life. Lampalzer U, Briken P, Schweizer K. Dealing With Uncertainty and Lack of Knowledge in Diverse Sex Development: Controversies on Early Surgery and Questions of Consent-A Pilot Study. Sex Med 2020;8:472e489.

Psychosocial care and support in the field of intersex/diverse sex development (dsd): counselling experiences, localisation and needed improvements

“…The repetition would also meet another limitation, which is the age of the data, that was collected already in 2015. As currently a paradigm change in intersex/dsd care is being observed and reported, an up-to-date data collection should be able to document any change in the status quo and to check whether new models of care that are aiming at overcoming the deficits and discursive gaps between the disciplines involved have yielded or contributed to an improvement of sustainable care [ 20 – 22 , 27 , 28 ].…”

“…These structures should guarantee open and empathetic professional interactions and communication [ 5 , 7 ]. Parents themselves have reported to seek help with finding words for the conditions they are newly faced with and with dealing with intersex in the family [ 26 , 27 ]. Information management on conditions and medical implications has been described as being too stressful to appropriately process the information in the first place, and therefore being processed and coped with rather at a later point in time.…”

“…Furthermore, parents address the need for a continuous psychological support that offers a safe space to enable coping and adjustment, and is addressing fear (e.g., considering the child’s future and stigmatisation) and psychological stress as well as preventing premature decisions [ 28 – 32 ]. How to reach full informed consent and how to address minor consent have been reported to be controversial issues in these processes [ 27 ]. In addition, the need of encounter and exchange with other parents in a similar situation and with similar experiences has been addressed [ 28 ].…”

Intersex-children in a binary culture: The disadvantaged gender

“…Половой диморфизм, предлагаемый в качестве аксиоматического знания на уроках биологии в российских школах, в свою очередь, отражает несоответствующее реальности положение вещей, способное ввести детей в заблуждение о патологичности комбинаций половой анатомии (Dalke, Baratz, Greenberg 2020). Текущая трактовка пола исключает из видимого социального пространства интерсекслюдей, а также всю сопутствующую терминологию и язык для обсуждения небинарной телесности (Lampalzer, Briken, Schweizer 2020). В подавляющем большинстве случаев в России люди с особенностями полового развития организма попадают в ситуацию, которую можно было бы точнее назвать намеренным социальным исключением или газлайтингом, под которым понимается целенаправленное введение человека в заблуждение, 1 Среди таких вариаций, могут, к примеру, встретиться: овотестис и синдром полной или частичной нечувствительности к андрогенам.…”

Assessing the health-related management of people with differences of sex development

“…Over the last 50 years, this approach has been increasingly criticized, when DSD-advocacy groups denounced the poor outcomes of medical and psychological care and demanded the right of intersex people to selfdetermination, bodily integrity, and protection from discrimination [13,14]. In particular, children's rights-and here the right to an open future, in which they can later determine their own gender and the associated protection against "cosmetic" interventions-came into focus [15,16]. The demands of these groups can be found in the context of other empowerment movements, which, for example, advocate the enforcement of patient rights (shared decision making, informed consent, patient centered outcomes, e.g.…”