Between a Rock and a Hard Place

© Greg Epperson

That’s how a one might feel if she or he is concerned about genetic risk but conscientiously objects to reproductive technology (reprotech). And if one’s risk is not X-linked (see preceding blog entry), then even natural sex-selection isn’t going to help as boys and girls will be at equal risk of inheriting the disorder involved.

Here is where one must take a good, long look at “risk.” Just what does risk involve? What does it mean to you as an individual?

The same risk factor (a numerical estimate that your genetic counselor computes from many pieces of information) can be viewed as minor or overwhelming.

Your risk perception depends on a number of things:

Do you have experience with or personal knowledge about the condition?

© Jaren Jai Wicklund

Your own experience will affect how you perceive the severity of the condition which, in turn, will affect how daunting a particular risk estimate seems to be. Where there have been adequate supports to help the affected person and their family live an enjoyable life, the impact was likely less than for a family who did not have, for example, a social network to call upon for help, supportive teachers and school system, or financial assistance with medical expenses and caregiving if needed.

In thinking of the possibility of having a child with the genetic disorder, consider whether treatment for it is available. Bear in mind that not all medical professionals know everything there is to know about genetics, the condition, or prospects for treatment now or in the future, so you will need to be proactive and educate yourself. Care management can also vary widely. Better care can improve quality of life and lengthen life, so advocating for your child, should he or she be affected, will become a part of your life.

© Laurin Rinder

Quality of life is a very slippery concept. The same situation might seem to provide fine quality of life to one person or family, but seem to be a miserable way to live to others. Interestingly, people with a disability usually rate their quality of life as higher than onlookers do (see The Disability Paradox: High Quality of Life Against All Odds. Social Science & Medicine, Volume 48, Issue 8, Pages 977-988. G.Albrecht).

In addition to how severe the condition seems to be to you, it is important to consider how you view personal responsibility. In some communities and families, babies being born less than ‘perfect’ is simply a fact of life, something that could and does happen to anyone–an occasional side effect of the natural process of procreation which is everyone’s right. In other communities or families, human control over the environment has become so commonplace that it is assumed we can and should control just about everything. Even if you disagree with the prevailing viewpoint, it will likely be in the back of your mind. So it is a good idea to acknowledge the ideas you’ve been brought up with and decide what your own convictions are. You are the ones who will be living day-to-day with your decision to have (or not have) a child or children. If you do decide that having a family outweighs what you perceive the risk of passing on a hereditary condition to be and you do begin a family, it is wise to surround yourself with supporters of that decision. A positive attitude will be important for you, but even more so for any child born affected by the condition.