Category Archives: Hypospadias research

Government Wants To Know What You Think

Government Consultation

The Government Equalities Office (GEO) has launched a call for evidence to provide everyone in the United Kingdom, especially people with variations in sex characteristics, with an opportunity to engage with Government and to tell us in detail about their experiences and what they think Government could or should be doing to improve their lives.

Variations in Sex Characteristics

Our working definition of the umbrella term ‘variations in sex characteristics’ is physical sex development that is different to what is generally expected of males and females.

The sex characteristics of focus here are naturally occurring genetic, chromosomal, gonadal, anatomical and hormonal variations.

In addition to many others, it includes diagnoses such as:

  • Congenital Adrenal Hyperplasia (CAH)
  • Hypospadias
  • Androgen Insensitivity Syndrome (AIS)
  • Klinefelter syndrome
  • Turner syndrome

Variations in sex characteristics is the umbrella term we have chosen for this exercise, but we are also aware that there are other terms in use, such as intersex and differences of sex development. When responding to this call for evidence you will have the opportunity to share your views on the term we have used.

A call for evidence is an information gathering process. It is not a consultation, which is a process of gathering views on Government’s legislative or policy proposals.

Alongside the call for evidence, we have also published a technical paper that sets out our current understanding of the evidence base and the relevant policy context.

The Government Equalities Office (GEO) wants all respondents to feel confident that any information they share with us through this call for evidence will be handled sensitively and in confidence.

We understand that having to provide details about your personal experiences when responding to the questions might be difficult. We take this very seriously and have included a list of resources at the end of the call for evidence for people to obtain support.

Once the call for evidence has closed, the Government will review and analyse the responses we receive. We will then publish a report of what we found and a statement detailing any next steps.

Read all about this call for evidence and submit your views here.

Could You Help With A Research Project?

I am Dr Keeley Abbott and I am a researcher at Birmingham City University.

I am carrying out a research project (alongside Dr Jagjeet Jutley-Neilson) that explores parental pre-operative and post-operative experiences and concerns of hypospadias repair.

As such, I am interested in talking to parents who are considering surgery but perhaps may be uncertain of whether to proceed, or those who have decided against surgery.

The study involves taking part in a short (informal) interview via telephone or skype. The discussion will cover areas of concern pre-and-post surgery and decision-making/attitudes around surgery.

We are specifically looking to talk with:

• Parents with children pre-surgery (within 24 months of birth or in the last 3 years).

• Parents considering surgery for their child or those who have decided against surgery for their child

Please note – parents must also be English speakers.

If you are interested in taking part, I will send you further information about the study.

If you are happy to take part then you will be asked to sign a consent form before completing a brief online questionnaire. This will include some basic demographic questions, as well as contact information.

Please use the email address below to express an interest in taking part in the study or to receive further information.

Research contact

Please do not hesitate to contact me if you have any further questions. I look forward to hearing from you.

Dr Keeley Abbott

(and on behalf of Dr Jagjeet Jutley-Neilson).