And let's not forget the marriage practices of almost every royal
household in the world which regularly lead to genetic disorders being
tolerated as a by-product of royal lineage..
-----Original Message-----
From: Health of minority ethnic communities in the UK
[mailto:[log in to unmask]] On Behalf Of
Bryant-Jefferies Richard (CENTRAL AND NORTH WEST LONDON NHS FOUNDATION
TRUST)
Sent: 17 June 2011 15:47
To: [log in to unmask]
Subject: Re: Call for papers (consanguinity)
I personally feel that consanguinity is an issue the 'White West' likes
to focus on as it is something associated with 'other cultures'; but the
risks to child health stemming from Western consumerist, 'live now
suffer the consequences later' lifestyles, no, let's not think about
them as being in any way problematic to children's health. There's
something racist in all of this somewhere...
Richard Bryant-Jefferies
Head of Equalities and Diversity
Central and North West London NHS Foundation Trust
Greater London House, Hampstead Road, London
NW1 7QY
020 3214 5769
07976 770781
CNWL became a Foundation Trust on 1 May 2007. Foundation Trusts involve
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________________________________________
From: Health of minority ethnic communities in the UK
[[log in to unmask]] On Behalf Of Sangeeta Chattoo
[[log in to unmask]]
Sent: 17 June 2011 15:25
To: [log in to unmask]
Subject: Re: Call for papers (consanguinity)
David has described the dilemmas within the field very well. The deate
in
the UK seems to lack objectivity about the nature and communication of
risk
on both sides. I think the comparison with women/ couples delaying
having
children and even the cultural solutions to the possible imnfertiltiy
faced
in later years makes a fascinating case for comparison. The crux of the
argument is that, decisioms related to health are governed by more than
seemingly 'rational' motives. However, the issue of consanguinity
remminds
us, yet again, how the cultures of minority ethnic groups are blamed for
health and health outcomes as an example of the uncivilized 'other'.
This
pathologisation of minority cultures is premised on wilful forgetting of
the history of consanguinous marriage within the English culture.
Sangeeta Chattoo
Research Fellow
Health Sciences
tHE University of York
On Jun 17 2011, Ingleby, J.D. (David) wrote:
> At the risk of getting my head bitten off, I would like to say: it's a
> pity that the extreme sensitivity of this issue has led to an almost
> total lack of discussion on this list about the state of the art in
> research on consanguinity.
>
> When you dig into the literature you find there are some risks that
are
> undisputed and others that are hotly contested. This is not
surprising,
> because modern techniques of genome sequencing have only recently been
> applied to this field and there are many confounding factors (e.g.
> socio-economic position) that need to be controlled for and often
aren't.
> It seems to me the issue is not just one of "how to get the message
> across", but "what message to get across".
>
> As most people working in this field will undoubtedly know, there is a
> large and respected international network working on consanguinity
which
> met most recently in Geneva in 2010. The outcome of this workshop was
> summarised here:
>
> Hamamy et al. (2011) Consanguineous marriages, pearls and perils:
Geneva
> International Consanguinity Workshop Report. Genetics in Medicine, May
6.
> [Epub ahead of print]
>
> The flyer for the ARC seminar refers to miscarriages as one of the
> problems creating a 'devastating burden' for families as a result of
> consanguinous marriages. Yet according to this article: "Consanguinity
> does not seem to be associated with elevated rates of miscarriages, as
a
> large majority of studies have failed to detect any significant
increase
> in fetal loss rates among consanguineous couples." Whom are we to
> believe? And if we don't know, how can we expect the people being
> counselled to know?
>
> Agreed, it is a basic principle of decision theory that one should
have a
> lower threshold for giving warnings when the condition concerned is
> extremely undesirable. But the danger of "crying wolf" is that people
> will become less inclined to believe you. As a result, they may be
> inclined to ignore other warnings that are well founded.
>
> One last point about "sensitivity". In many communities, consanguinity
is
> highly valued; the article mentioned describes some of the reasons
why.
> One can compare it with the tendency of educated Western women to
> postpone having babies: people who do this usually know there are
risks,
> but for them the advantage - or perhaps the necessity - of not
> interrupting one's career outweighs these risks.
>
> If one wants to persuade people not to do certain things, one should
> acknowledge, and show respect for, the reasons why they do them.
> Otherwise they simply won't listen. The job of a counsellor is surely
to
> give scrupulously objective information about the known risks of
> something and enter into a dialogue with people which will make it
easier
> for them to weigh up the risks and the advantages in a well-informed
way.
>
>What do others think?
>Best wishes,
>David
>
>________________________________
>
>Van: Health of minority ethnic communities in the UK namens Mark
Johnson
>Verzonden: vr 17-6-2011 11:24
>Aan: [log in to unmask]
>Onderwerp: FW: Call for papers
>
>
> Colleagues may find the attached interesting: we acknowledge that this
is
> a very sensitive issue but the group leading it are aware of this and
> also keen to ensure that suitable support is given to those in the
> communities who are concerned about it. A senior and respected
researcher
> will be in the chair - and there are real clinical risks to be
debated.
>
>Mark R D Johnson
>Director, MSRC/CEEHD
>De Montfort University
>
> It is a pretty delicate subject so we are trying to approach it with
> sensitivity and in order to best support communities. Thank you for
help
> as ever. Best wishes Bridget BRIDGET FISHER Head of BME Services ARC
Tel:
> 01246 555043 ---------------------------- ARC BME Websites
> http://www.lden.org.uk <http://www.lden.org.uk/>
> http://givingusavoice.org.uk <http://givingusavoice.org.uk/>
> http://www.bmetrainingforall.co.uk
<http://www.bmetrainingforall.co.uk/>
> http://www.movingonup.info <http://www.movingonup.info/>
>
>
>
>
>
>
>
> -- Association for Real Change Registered Office: ARC House, Marsden
> Street, Chesterfield, Derbyshire S40 1JY Telephone (01246 555043) Fax
> (01246) 555045 email [log in to unmask] Registered Charity No.
> 285575 Registered in England Company No. 1658354 Scottish Charity No.
> SC039129
>
>
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