Facilitating informed choice among those at risk of recessive disorders is a key NHS policy objective. In 2001, the Department of Health established the Sickle Cell and Thalassemia Screening Programme (now part of Public Health England). One of the aims of the programme is to provide timely ante-natal sickle cell screening to all couples, who might be carriers of sickle cell.
Sickle cell disorders are inherited blood disorders which can have an impact on a person’s quality of life. Both parents have to carry a genetic trait (sickle cell trait) before it can be passed on to their offspring. If they do, there is a one-in-four chance in every pregnancy that their child will be born with the disorder. Carriers can be identified by a simple blood test.
Ante-natal care is the care a woman receives when she is pregnant. During this care choices are offered about tests or screening for the woman and her baby. Ante-natal care involves fathers too. If a mother is identified as a carrier for sickle cell, ideally the father of the baby should be offered screening. This enables the couple to make an informed choice on the future of the pregnancy. Fathers, however, are not always tested, even when their partner is a known carrier. Little is known about why this is so. Not engaging with fathers during ante-natal screening for sickle cell disorders creates local difficulties and threatens a national policy objective.
Our research discovered that there are many reasons why fathers find it difficult to be involved in ante-natal screening for sickle cell disorders. Some are the consequence of disadvantage and inequalities, others are associated with how services are organised. Men’s perceptions about the relevance of screening are equally important, along with their relationship with their partners and families. Examples of good practice also exist and we can learn from these.
Berghs, M; Dyson, SM, and Atkin, K (2017) Resignifying the sickle cell gene: narratives of genetic risk, impairment and repair Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 21 (2): 171-188. [ISSN: 1363-4593] http://dx.doi.org/10.1177/1363459315595850
Dyson, SM; Berghs, M and Atkin, K (2016) “Talk to me. There’s two of us”: Fathers and sickle cell screening Sociology 50(1): 178-194. [ISSN: 0038-0385] http://dx.doi.org/10.1177/0038038514560261
Atkin, K; Berghs, M and Dyson, SM (2015) “Who’s the guy in the room?” Involving fathers in antenatal care screening for sickle cell disorders Social Science and Medicine 128 (2015): 212-219.[ISSN 0277-9536] http://dx.doi.10.1016/j.socscimed.2015.01.039