Our charity has introduced a genetic testing service for residents of the Republic of Ireland, for just EUR 159 per test. 

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So, how does it work?

Genetic testing – at a glance

  • Order a testing kit online - we'll send you a test kit by post
  • Do the test and pop the sample in the post to our lab in Manchester (UK)
  • We send you and your GP the results within 4 weeks 
  • Arrange an appointment with our Advanced Nurse Practitioner to discuss the results, by phone or Zoom video call

Plus - continued support from us when or if you need it. All this is included in the test kit price of EUR 159.

Order a test kit

What is this initiative about?

Our charity has partnered with a MHRA-accredited laboratory to offer genetic testing by post for the most common variants of genetic haemochromatosis (c282y, h63d).

Our charity is here to help throughout the service, from initial discussions around whether to arrange a test, through to counselling, advice, information and support following the results. We are also able to help with any questions or concerns following a diagnosis resulting from a test and to advise on the next steps in the care pathway.

The test requires a small blood sample (about a teaspoon’s worth) and so is not suitable for people who are blood or needle phobic.

Who is this genetic testing service for?

This service is available to anyone resident in the Republic of Ireland who is 18 years old or older, including anyone who may be concerned that they may have genetic haemochromatosis and would benefit from a test.

Briefly, what’s involved?

When you order a test, we will post a genetic testing kit to you. This contains everything you need to take a sample and return it to our lab. It includes full instructions showing how to take the sample yourself. You take the sample by making a small prick on a finger and squeezing about 5 ml (about a teaspoon) of blood into a tube.

The testing kit contains everything you need, including instructions, sterile wipes, lancets (for making the finger-prick) and a reply-paid address label to return the sample by post to our lab. Once you’ve collected a sample, simply return it the same day by post.

When the lab receives your sample, they will analyse it. They will look for the most common variants of genetic haemochromatosis (known as c282y and h63d). These variants account for over 90% of people with genetic haemochromatosis in the UK.

Once the results are available, we will write to you with a copy of the results, explained in plain English. If the person tested has genetic haemochromatosis or is a carrier, we will offer them a telephone consultation to discuss the results with our GH Advanced Nurse Practitioner. We will explain to them what the results mean. It’s also an opportunity for them to ask any questions they may have about the results.

We will also write directly to their GP with details of the test results and our “Quick Guide to Haemochromatosis for GPs” so they are aware that a test has been done – and so they know what the next steps in providing care should be.

Is it easy to take the sample?

Yes. Every testing kit provides detailed instructions on how to take the sample. We also provide telephone and email support from our lab partners to help with any questions. The process takes just a few minutes – plus a walk to the post box to return the sample on the same day in the reply-paid envelope provided!

How long does the service take?

We aim to provide the results to the person taking the test and their GP within 4 weeks from receipt of the sample. However, we usually provide results more quickly than that.

How much does the service cost?

Each test kit costs EUR 159 - you can order as many kits as you wish.

Order a test kit

Why is our charity launching this service?

We know that early diagnosis of genetic haemochromatosis saves lives. Yet many people struggle unnecessarily to get family members tested through existing healthcare channels. Commercial services are expensive and there are concerns about the quality, privacy and efficacy of some services available in the Republic of Ireland.

Prevention of ill-health is better than cure. We hope this service helps people understand their own risks of iron overload - and to live well with the condition if they have it.

This initiative compliments existing healthcare services; if someone tested is found to have genetic haemochromatosis, their onwards care is the responsibility of the HSE.

We are partnering with a MHRA-accredited laboratory partner. They specialise in genetic testing and work with numerous hospital trusts, including University College London, King’s College London and Great Ormond Street Hospital. Last year, they processed over 40 million samples, seven-days-a-week.

Am I eligible for this service?

We are providing this service to anyone who is :

  • 18 years old or older
  • Resident in the Republic of Ireland
  • Already registered with a General Practitioner or surgery in the Republic of Ireland

We have published the detailed terms and conditions for service here.

Can I use this service to test a child?

Initially, the service is available to test people aged 18 or over. There are many additional aspects to consider before testing young people under 18 years old. If you are concerned to understand the genetic status of young people in your family, consider getting both parents tested first. As genetic haemochromatosis is inherited, this can provide simple and speedy reassurance of the likely genetic status of a child, without testing the child. If you would like to arrange testing of a child aged 16 or 17 please contact us to discuss your options, first.

I have a large family – how many testing kits can I buy?

You can order as many test kits as you need.

Will this service tell me about other genetic conditions I may have?

No. This service will only test for the two most common mutations associated with genetic haemochromatosis, known as HFE mutations c282y and h63d.

Will this service tell me whether someone has Type 2 or Type 3 or Type 4 genetic haemochromatosis?

No. This service will only test for the most common Type 1 mutations of genetic haemochromatosis. Due to the complexity of the process, the genetic sequencing costs for Type 2/3/4 are currently cost-prohibitive, though we hope to offer these as an "add-on" if prices fall over time. 

Does this service protect my privacy?

Yes. Unlike commercial services, we do not re-sell your genetic data to third-parties or license data to pharmaceutical companies or others. Our charity is a Data Controller registered and regulated in the UK by the Information Commissioner’s Office (reference Z5256349).

Can my family help others, by getting involved?

Yes. Our charity undertakes medical research to help people affected by genetic haemochromatosis. This research also helps to inform our advocacy of policymakers, elected representatives and other stakeholders.

With your consent, the anonymised results of the tests can be analysed by our research team to help us better understand the prevalence of genetic haemochromatosis (ie how many people have the genetic mutation that predisposes people to iron overload) across the country, by age and gender.

All data is held securely according to our data protection and privacy policy. You may opt-out of participating in our research when ordering kits, if you prefer.

I’ve changed my mind, can I return a kit for a refund?

No. This service is non-refundable once ordered. For infection-control reasons we cannot re-use testing kits once they have been despatched, even if returned “unused”.

My sample wasn’t suitable for analysis, can I have a refund?

No. This service is non-refundable once ordered. Full instructions are provided with each testing kit to ensure a sample is collected correctly. It’s important to return the sample on the same day that it is taken, ideally on a weekday, so the sample is returned by post promptly for analysis.

I have a question that you haven't answered on this page...?

No problem, just contact us to get in touch (weekdays 9am-3pm).