“ Category: Health Research „
This website for Biobank UK is both interesting, detailed and informative. It outlines the entire process by which vital information is collected, stored and used, information collected to further medical knowledge. Each page is well-organised, information being supported pictorially when needed.
I'd like to give you a recount of my personal experience of the research outlined, and invite you to study the website for more detailed information.
My husband and I were recently invited to contribute to vital medical research, primarily aimed at building up a valuable resource for "improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses (including cancer, heart diseases, diabetes, arthritis and forms of dementia) and the promotion of health throughout society." Researchers are trying to discover why some people develop particular illnesses, whilst others do not. Hopefully, findings will give future generations a better chance of living lives free of these disabling, potentially lethal conditions.
Whilst we were not likely to benefit personally from this research, we felt it important to participate, for the benefit of future generations, regarding it as our civic duty to assist in the advancement of medical knowledge. After all, we and various members of our family, regularly use life-saving medications, developed over the last few years. We have also lost our fair share of friends and family members to these terribly diseases, and hope that our children will not have the same sad experience.
Our names and contact details had been selected from NHS files. A cross-society selection of 500,000 adults aged 40-69 have been encouraged to participate; this target number has now almost been achieved, the number being considered to be a statistically viable sample, about which important data can be attained. We were informed that all personal information would be held in confidence, being protected by the Data Protection Act. Details stored are: name, DOB, NHS number and General Practice.
UK Biobank is a major UK medical research project, being run as a non profit-making charity, funded by the department of Health, Medical Research Council and Scottish Government, and was initially set up in 2000. The analysis of the answers, measurements and samples collected from participants, will, it is hoped, enable researchers to work out why some people develop particular diseases yet others do not.
The process of collecting the information:
1. After we had accepted the initial invitation to participate, we received confirmation of the date & location of our assessment, plus brief notes of guidance about how to prepare and what to expect. Further information could be gained by reading the information online at http://www.ukbiobank.ac.uk/about/what.php
2. There was a pre-assessment questionnaire to complete, to use as an aide-memoire. This included details concerning any medication we were taking, operations we had had, family history (relatives who had suffered from a specific list of medical conditions), our birth details (weight, if breast-fed, address when born.) Personally, I was unable to give precise information about birth details as precise records had not been kept within the family, and there are no longer any senior members of the family alive to ask.
3. On our arrival, we were greeted in a friendly, unintimidating manner. We signed a detailed consent form, giving permission for the various tests and storage of the information and samples, even after our death. It also showed our understanding of the fact the whole process was voluntary, that we would not benefit personally, and that we would not have access to any information except for the basic physical measurements.
4. We were then led to the computers, where we completed a detailed questionnaire using a special touch screen. Topics included personal and family history, diet and life-style, mental acuity and memory tests, and hearing tests.
This questionnaire was fairly comprehensive though not exhaustive. At times it was actually quite frustrating to answer, as there was no opportunity to record additional relevant information. For example, questions about specific types of cancer were asked, but no space given to provide additional information re the type of cancer that actually HAD been suffered by close relatives. And as both my mother and her brother had suffered from the same type of cancer, I thought this was potentially important data. Also, an adult adopted at birth was asked questions related to ADOPTIVE parents, giving answers related to life-style, not taking into account that it was actually possible to answer questions about the original BIRTH parents' medical histories, if such had been subsequently obtained by private research. For every question we had the chance to refuse to divulge that information (eg re sexual history.)
The results of the questionnaire were stored on a small memory stick, which we were asked to hand over to the medical personnel at each stage of the assessment process. It was retained after the final test, prior to donating the samples.
5. Next we were taken to a separate cubicle where additional information, such as birth details, was recorded. Blood pressure and arterial stiffness measurements were recorded.
6. Then we went to series of small rooms where different aspects of health data were collected. At each stage questions were asked to ascertain our suitability for each test. For example: Was I pregnant? Did I wear a pacemaker? We also had the right to refuse any test, without having to give a reason.
* First our eyes were inspected (observations of eye, including measurements and the puff test for glaucoma, plus a detailed photo of the retina of each eye was taken.)
* Physical measurements were taken: weight, height when standing, height when seated, waist and hip measurements, bone density was measured using 'the foot machine'.
* A dynamometer was used to measure the strength of our handgrips. They had to double-check my husband's results as the nurse hadn't realised he was left-handed, and she was surprised by his measurements.
* Lung capacity was checked, using a spirometer.
* Fitness was checked by 6 minutes on an exercise bike, our heart-rates being monitored with electrodes.
* Seven phials of blood were extracted (with some difficulty, in my case - never did respond well to vampires!)
* Finally we were asked to collect / donate urine and saliva samples, which we were instructed to place in small sealable tubs inside a sealable bag.
7. We were given a printout of key measurements and their interpretation or implications. In my case:
* Smoking: non-smoker - good
* Blood-pressure : ******** - Good
* Weight ********
* Height ********
* Body mass index ******** - Well, let's admit it, I am now on a diet!
* Percent body fat ********* - high (See above comment!)
* Heel bone ultrasound - 67 dB/MHz - normal (my husband's was better.)
* Lung function:
FEV1 value: 2.30 litres - good
FVC value: 3.05 litres - good
FEV1/FVC ratio: 75 %
* Intraocular pressure: 17.0 mmHg - good
8. When all the tests had been completed, we were offered light refreshments (a drink and biscuits) and were informed how to claim basic travel expenses.
The whole process was interesting and painless, and took approximately 2 ½ hours to complete. All information and samples will be stored safely and securely, though, obviously, researchers will have access to them when required. There is the possibility that follow-up appointments may be issued, should the need arise.
For further information of this process, click on the link above.