Doing the right thing

There is quite a dialogue going on in the US about the anonymity of sperm/egg donors. I can’t help thinking about how we in the UK make changes in our laws and the process of thought which precedes change.

A very significant change in UK thinking about people and their rights took place in the late 18^th/early 19^th centuries which led to the abolition of slavery. Typically in Britain this took place in two stages. Firstly trading in slaves was abolished throughout the Empire in 1807. This allowed owners to keep the slaves they already had but not acquire new ones i.e. the contracts which existed in the past regarding the sale or purchase of slaves were not invalidated and property was given its usual pre-eminence. Later in 1834 slavery itself was abolished although, in a typically British fashion, there was some small print.

This shows that although the legislators must have been aware that slavery was a violation of human rights, they put the convenience, wealth and commercial practice of the slave owners before the rights of the slaves. So even when a contract is regarded as being morally wrong, it must be upheld by the law.

Similarly, when the Human Fertilisation and Embryology Act recently came into force in the UK, there was an acknowledged realisation that donor offspring should be allowed access to their conception records after the age of 18. Once again although there has been a moral and psychological awareness of the predicament, commercial practice and /or contracts signed prior to 1991 must be allowed pre-eminence. So no hope for the thousands conceived before that time. Whilst I am not equating slavery with advances in human fertilisation, I am looking at the way the law is used to protect the indefensible and how changes occur so slowly that it would seem that there is a hope that the difficult and quarrelsome people will die out.

Whilst many people drawing up the contracts which protected donor secrecy in the past may have had good motives in mind, our attitudes towards children, adoptees, relationships, families and sexuality has moved on. We should not be using the law to uphold contracts which are morally and practically wrong. Of course safeguards will be needed to protect all parties but this is not insurmountable. We’ve had our first law – how about the second?

Let us have the courage and will to tackle the moral issues which beset us in the 21^st Century and instead of using delaying tactics in the hope the problem will go away, let’s do what is right – now.

So what is a parent?

Just back from a weekend in London with our son. It was great to relax, get away from all the pressures and enjoy all the wonderful food that was cooked for us.

I had a reply from the General Medical Council about access to my records. As I thought, records from private clinics were not normally passed to the GMC and since I was born before the National Health Service was established, Dr Reynold Boyd, who carried out the donor insemination process, was legally entitled to destroy his records. Yes, that’s right, medical practitioners in the 20^th Century were perfectly entitled to destroy the genetic records of donor offspring! Of course, things will have changed now won’t they? After all slavery has been abolished, women have the vote and buildings must have access to the disabled …..

Not only haven’t they changed but there are people steadily working to ensure that the old records are never uncovered. Why? What were they doing that needs so much shrouding in secrecy? In countries where there is less secrecy donors may have decreased in number but parenthood is not a right. New donors may welcome the opportunity for more openness leading to a different kind of donor profile. This may well change the concept of the nuclear family but that has been changing anyway. There have always been families of stepchildren and half-siblings but now we have new families with parents of the same sex. Like it or not, the family is evolving and adapting to the age in which we live.

In America, lawyers such as Julie Shapiro are trying to define what makes a modern parent. Is it the person who brings you up or is it your biological parent? This debate is not easy as so often the family situations are complex and individual. However, at least a debate is going on. In Britain it is as if the debate has taken place and everything is solved. The new Act of Parliament falls far short of resolving the situation. The law must keep up with the way medical intervention is “assisting” human fertility.

In all this wonderment at the advances in science we must remember that the family created is different from the outset. It is not only the wishes of the parents and donor who must be considered but the wellbeing of the offspring who are not present and not legally represented when the original contract is drawn up. Third party intervention and the presence of a legal contract make it entirely different from normal reproduction.

For every step forward I take in trying to find out my genetic parenthood, I seem to be knocked back two. It is very dispiriting especially at this time. However, I know that there are people who have been trying to breach the Establishment walls of secrecy for some time. Those advances in the treatment of women and the disabled also met with fierce resistance or indifference.

The Bubble is drawing nearer

After a fortnight of Indian Summer weather, the warmth and calm have disappeared. This has been replaced with a cloudy sky, some rain and a real drop in temperature. However, there is compensation in the vibrant colours of autumn. In our own garden the mountain ash are particularly beautiful with their leaves on the turn and colourful red berries.

Autumn is a timely reminder of the fact that entering the bubble is drawing nearer. With possibly only three months to go before I take on a new DNA and blood group, I am still very concerned about the old ones. I have been reading some pretty horrifying stories about egg/sperm donors who become seriously ill and who have a dilemma about notifying not only the egg/sperm banks about destroying their donations so that future possible offspring are not affected, but also about notifying those offspring that now exist through their help. They shouldn’t have to feel that their anonymity would be violated.

In the past, some clinics were less scrupulous than others about researching donors’ medical histories but even where they were scrupulous, many slow-onset diseases may have affected donors’ own parents as they reached late middle age and may not have been known about at the time when the donor’s details were recorded.

What does this mean for donor offspring? Many who were told early in life, but who don’t qualify to know their background under the new UK Human Fertilisation and Embryology Act, do not know their medical backgrounds and so must have huge doubts about their own futures and having children. This is hideously unfair. For those of us coming to this knowledge of our conception later in life, we have possibly already had children.

If, like me, they have reached middle age only to be struck down with illnesses/diseases which are not found in the family they thought they were part of, they have had no opportunity to prepare, to alter lifestyles or to get regular check-ups. We also pass on to our children a heavy burden of doubt about what is an environmental hazard as opposed to a genetic heritage. Anonymity of donors could still be maintained if a third party were to take charge of examining and holding records which could be available to donor offspring. This probably won’t help people in my age group where records have been wantonly destroyed without any regard for the offspring created. Maybe it could stop records being destroyed in the future and help just some of the people over the age of 18 who are not helped by the new law.

I’d like to think that part of my journey could help.

A complex journey

The last few days have been quite grim as I have come off steroids. It’s the same every time and all chemo patients will know what I am referring to. The physical effects and tiredness are actually easier to cope with than the depression which hovers like a storm cloud.

However, as the week progresses I know I shall get better and my son has invited us to London for the weekend to be thoroughly spoiled. Having something to look forward to is really important.

When I embarked on my journey into the bubble I thought that the preparation for the transplant, the isolation and subsequent battle of host versus graft disease would be my main battleground. Of course, it still is. No other battles can be fought if you’re dead! However, because of what I have learned along the way, other battles have emerged – not just for me but for all seeking the right to know their true identity.

I have been reading a very interesting statement which is a charter of donor conceived people’s rights. I’m not sure where this originated from but it compares the rights of all human beings as set out in the Universal Declaration of Human Rights, with those actually enjoyed by the donor conceived. Of course, the Declaration of Human Rights is a statement of ideals ultimately, in that not all countries of the world recognise those rights, but we tend to think that the more sophisticated and developed countries of the world do uphold those rights. However, ironically, it is probably these same sophisticated, developed countries who have actually withheld them from the donor conceived.

Whilst we look with horror at the way women are treated in some parts of the world, at how slavery still exists and children are exploited, we might well look in our own backyards. It would be good to think that we can move towards fairness for all without encountering prejudice, derision and complete lack of interest. Then perhaps the real storm clouds will be lifted.

Three months to go

Just about three months to go. Am I being reckless in saying that? There are so many imponderables – I may not get into full remission soon enough, my health may not be good enough and will my possible donor still be available? The last question hangs over me like a cloud.

Nevertheless, things have worked out so far, not necessarily right on schedule, but they have worked out and I must have faith that this is what is going to happen. This means I must make plans, not only for myself, but the family.

My mother is 96 and I don’t think we ever imagined that she might outlive me, but this could be the case. I have had serious problems and delays in trying to transfer my running of her bank account to my daughter but this must be done. Similarly, I must look at my mother’s will and redo mine so that they are up to date. This sounds very morbid but if we can organize things so that she and the family are going to be properly looked after, there is less for me to worry about.

I have had an on-going battle with the Inland Revenue. I am supposed to fill in a tax return by the end of the month, but despite my phone calls and letters they will not/cannot send me the correct form. I can’t imagine they will be very sympathetic if I say that I have not filled it in because I am not well or in isolation.

All that aside, surrounding me are really great people who have carried me through this difficult time. Whatever my views about somewhat mixed medical treatment in the past, I cannot fault the way I have been treated this year. I feel more involved in the decision-making for the first time which, for someone like me, is crucial.

A few days ago the Bramley apples were harvested from the garden before they are brought down by the autumn winds. The tree is very heavy anyway as its boughs have not been pruned for about three years – we’ve had other things on our minds. Somehow over the next few days the crop will be peeled, cored and blanched. Apple pies will be made and frozen. The normal activities of preparing for winter will have been accomplished – a winter perhaps like no other.

Our medical history

I’ve had my last chemo for a few weeks as I am due to have a PET scan to see if I am in remission yet. If I am, then the real journey can begin. However, as usual the steroids made me very hungry and hyperactive and now I’m experiencing the downside of withdrawal.

I did see an interesting programme on television a few days ago about twins which made me understand the significance of genetics and epigenetics a little more. I can see that genetics have a major influence on our health but even they are affected by what happens in the womb and our lifestyle.

To be honest, the real problems of the donor-conceived are about identity, culture, genealogy and even ethnicity but nobody is very sympathetic about that so at the moment I am concentrating on the very practical area of our medical genetics and the fact that we don’t know about our history.

I’m not just thinking about Huntingdon’s disease, haemophilia or muscular dystrophy where you might have to consider the risks of marriage and children quite carefully. But it’s also about prevention. For example, I have always known that there is a lot of arthritis in my mother’s family and I have taken care to adopt a diet which seems to keep me relatively free of its effects.

Of course some diseases can strike out of the blue. Not all cancer or heart disease is genetic. However, I have a friend whose sister suffered a heart attack so he went for a check-up himself and found he had some serious problems which, fortunately, have been put right. It’s not about living in fear, but if we know that some members of our family have had problems we can organise check-ups or perhaps keep off the Pill or HRT. It is quite difficult when you discover that cancer/lymphoma is at stage 4. On the other hand, if you know that genetically your family history is good, you can concentrate on living a healthy lifestyle without worrying that an unknown genetic factor will affect you.

That’s all we ask. Is it so difficult? Must this information be a secret? Yes I know there are lots of people who know very little about their medical history and that is both sad and difficult, but we are the only group where a commercial contract has existed between the medical profession and our parents/donors to deliberately deprive us of this knowledge.

The power of the word

I wrote today’s blog just before I went to see my MP but having a sleepless night after the meeting on Monday I just had to get up and put pen to paper to get my feelings out of my system so I used what I wrote then instead. I am grateful for the thoughtful comments which make this worthwhile.

For the past few days I have been struck by how calm and still everything has been when we have gone for our early morning walks. The large oak and beech trees in Westwood have been standing for so many years it puts our lives into perspective. The calm has prepared me for what may be a battle to come.

Since finding out about my conception I have been very struck with the way in which other donor offspring are handling the issue. Some have taken cases to court which has required determination, money and much research. Others are tackling on a daily basis comments on the internet and judgements by lawyers and medical staff which take no notice of the needs of donor offspring. They are very articulate and knowledgeable people.

As a newcomer I have much to learn and I am aware how much chemotherapy has weakened me mentally, physically and emotionally. I could never have imagined how the news would change me and my concepts of identity and family relationships. I could never have anticipated how these changes would come between me and the other interests I have had, taking me over and forcing me to rethink just about everything.

Anyone who has had chemotherapy will know not only about the overwhelming tiredness but also how concentration and recall are affected. I feel very conscious that I am less articulate than usual which affects my confidence. However, this is not a time to sit back and give up. I have a wonderful cousin who has spent 37 years in a wheelchair without an ounce of self pity. No, this is a time for coming to terms with my limitations, but maximising my assets, one of which is determination. In his poem Digging Seamus Heaney looks back at his forbears’ much more physical life on the land and says:

Between my finger and my thumb

The squat pen rests.

I’ll dig with it.

The power of the written word is strong and who knows what may come of it.