For a common and accurate definition of Fetal Alcohol Spectrum Disorder…
At CanFASD, we have been working to create a common definition of FASD for use in a Canadian context.
We believe that if all governments, service agencies, and researchers use a common definition of FASD, it will:
- Reduce stigma, given that many existing definitions are quite harsh and use incorrect or outdated information
- Increase understanding of the disability
- Increase consistency in our messaging
- Reduce confusion
When talking about FASD, we recommend that individuals avoid:
- Referring to FASD as something that is “caused by” or is “the result of” a mother consuming alcohol while pregnant, as this can inadvertently place blame
- Fatalistic terminology and phrasing (e.g., “with no cure”, “devastation”, “preventable”, and “average life expectancy”)
- Outdated terms, like “mental deficiency” and “mental retardation”
- In line with our language guide, avoid the terms primary and secondary disabilities
Our draft definition has received feedback from our CanFASD staff, our team of Research…
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What is this research about?
Fetal Alcohol Spectrum Disorder (FASD) is the leading cause of a developmental disability (DD) that could be prevented. The quality of life of people with FASD is improved when they begin interventions at an early age. It is not yet possible to screen a fetus for FASD before birth. Tests are under development that could be used to identify newborns that have been exposed to alcohol in the womb. There are ethical concerns that must be considered before a prenatal alcohol exposure (PAE) test is done. This research talks about the common ethical concerns related to screening for FASD.
What did the researchers do?
The researchers conducted a literature review using 3 databases. A variety of key words connected to FASD were used for the literature search. Ethical concerns with PAE tests were found after a review of relevant literature.
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Fetal alcohol spectrum disorders or FASD is a debilitating condition caused by the exposure to alcohol during the prenatal period. In other words, a consequence of maternal consumption of alcohol [Reviewed in (Liyanage et al., 2017)]. That is what the basic and most famous definition of FASD.
But I’d like to ask the question, is it only caused by the maternal consumption of alcohol during pregnancy. Or does alcohol exposure rather have intergenerational or transgenerational consequences?
The history and the drinking behavior of the mother prior to getting pregnant may influence their drinking behavior during pregnancy as well. In fact, a study by Chang, 2006 says “Previous alcohol use by the pregnant woman was the strongest predictor of prenatal alcohol use.” (Chang et al., 2006). The maternal drinking behavior is also known to be impacted by father’s (male partner’s) alcohol or substance abuse behaviors as it may encourage the mothers to continue drinking (Högberg et al., 2016). The domestic violence, spousal abuse and trauma caused by partner’s alcohol problems may be a causative factor for some women to seek alcohol as a way of relief (Gearing et al., 2005), regardless of their awareness of the harmful effects of alcohol. Therefore, the paternal contribution to FASD may not be simply ignored. We should also praise the partners who made an attempt to change their drinking behaviors after being aware of the pregnancy and the partners who protect mothers from consuming alcohol (Gearing et al., 2005; Högberg et al., 2016).
A child with FASD and a mother who consumed alcohol while pregnant already makes it a problematic phenomenon of two generations. But mother and the child are not the only ones entangled in this problem. Their family is the next generation that is impacted. For example, grandparents, close or distant relatives, sometimes neighbours often acquire the role of ‘caregiver’ of the child with FASD (Healthy Child Manitoba, 2015; Hussain et al., 2012) as well as the mother who is undergoing social stigma, shame, guilt and sometimes alcohol dependency issues and required to abide by properly organized intervention programs. Therefore, the issues associated with FASD and alcohol go far beyond a single family.
Due to the nature of their disease conditions and impaired ability to follow rules, many youth and adults with FASD get involved with the justice system (Flannigan et al., 2018). They may cause community disturbances, violent behaviors among other crimes. Therefore, at this point, it becomes a societal problem beyond a single family.
The above explains the ‘Intergenerational Phenomenon of FASD’.
But what is this ‘Transgenerational Phenomenon of FASD‘? Transgenerational means the effects of alcohol exposure could be transmitted over generations, from father or mother to the children. This is best explained by transgenerational epigenetic mechanisms.
Epigenetic mechanisms are processes that cause changes beyond the genomic sequence, such as DNA methylation and histone post-translational modifications, the changes that occur on DNA and DNA bound proteins (Liyanage et al., 2014). The transgenerational epigenetic concept suggests that the insult of alcohol exposure preconception to the father or the mother, that can make heritable epigenetic changes in germ cells (sperms/eggs) [Reviewed in (Liyanage et al., 2017)]. Such that, the memory of the alcohol insult is transmitted to the child. There is some evidence to support this theory of transgenerational epigenetic memory in animal models (Abbott et al., 2018; Govorko et al., 2012; Popoola et al., 2017).
This concept of transgenerational epigenetic transmission of alcohol insult makes the issue of alcoholism and FASD even more problematic as the prevention of alcohol consumption by both parents or men and women in their childbearing ages can be quite challenging. Another important question is how many generations this memory of alcohol insult can be transmitted. Evidence from animal models suggests that the epigenetic memory of alcohol insult to the genes in sperms (male germline) can be transmitted up to three generations (Govorko et al., 2012). Another study suggested that the maternal drinking may not only affect the child who was exposed to alcohol but also the grandchildren adding more evidence to the transgenerational phenomenon (Abbott et al., 2018; Rose, July 13 2017). Additionally, a 2018 study also showed evidence in an animal model that the prenatal alcohol exposure may cause alcohol drinking behaviors up to three generations (Nizhnikov et al., 2016). Some studies involving humans have shown a correlation between alcohol consumption by grandmothers and FASD symptoms in their grandchildren (Kvigne et al., 2008).
If we debunk the well-known myth that fathers don’t play a role in FASD, further research may be able to provide more insights into preconception alcohol consumption and its relationship to FASD.
We should understand that this Phenomenon does not necessarily mean that one or two bears taken by our ancestor great-grandmothers may make all of us into alcoholics or individuals with FASD. Both alcoholism and FASD are multifactorial in origin. I.e. there are numerous risk factors including genetics, epigenetics, nutrition, lifestyle, other substance abuse to name a few (Liyanage et al., 2017). But preventing such possible transgenerational harm is our responsibility. That is why it is absolutely necessary to raise awareness of the harmful effects of alcohol consumption, especially among the youth to avoid alcohol or use protection during intercourse if alcohol consumption occurred.
Note: Opinions expressed are solely of VR Writers and do not express the views or opinions of any others…
Abbott, C. W., Rohac, D. J., Bottom, R. T., Patadia, S., & Huffman, K. J. (2018). Prenatal ethanol exposure and neocortical development: A transgenerational model of fasd. Cereb Cortex, 28(8), 2908-2921. doi:10.1093/cercor/bhx168
Chang, G., McNamara, T. K., Orav, E. J., & Wilkins-Haug, L. (2006). Alcohol use by pregnant women: Partners, knowledge, and other predictors. Journal of studies on alcohol, 67(2), 245-251. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/16562406
Flannigan, K., Pei, J., Stewart, M., & Johnson, A. (2018). Fetal alcohol spectrum disorder and the criminal justice system: A systematic literature review. Int J Law Psychiatry, 57, 42-52. doi:10.1016/j.ijlp.2017.12.008
Gearing, R. E., McNeill, T., & Lozier, F. A. J. J. I. (2005). Father involvement and fetal alcohol spectrum disorder: Developing best practices. 3, e14.
Govorko, D., Bekdash, R. A., Zhang, C., & Sarkar, D. K. (2012). Male germline transmits fetal alcohol adverse effect on hypothalamic proopiomelanocortin gene across generations. Biol Psychiatry, 72(5), 378-388. doi:10.1016/j.biopsych.2012.04.006
Healthy Child Manitoba. (2015). Every day is an adventure: What parents and caregivers need to know about fetal alcohol spectrum disorder (fasd) Retrieved from Manitoba, Canada: https://www.gov.mb.ca/healthychild/fasd/fasd_caregivers.pdf
Högberg, H., Skagerström, J., Spak, F., Nilsen, P., & Larsson, M. (2016). Alcohol consumption among partners of pregnant women in sweden: A cross sectional study. BMC public health, 16, 694-694. doi:10.1186/s12889-016-3338-9
Hussain, F., & Alarcon, K. (2012). Grandparents get help raising children with fasd. Retrieved from http://www.indigenousreporting.com/2012/story-6/
Kvigne, V. L., Leonardson, G. R., Borzelleca, J., & Welty, T. K. (2008). Characteristics of grandmothers who have grandchildren with fetal alcohol syndrome or incomplete fetal alcohol syndrome. Matern Child Health J, 12(6), 760-765. doi:10.1007/s10995-007-0308-y
Liyanage, V. R., Curtis, K., Zachariah, R. M., Chudley, A. E., & Rastegar, M. (2017). Overview of the genetic basis and epigenetic mechanisms that contribute to fasd pathobiology. Curr Top Med Chem, 17(7), 808-828. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/27086780
Liyanage, V. R., Jarmasz, J. S., Murugeshan, N., Del Bigio, M. R., Rastegar, M., & Davie, J. R. (2014). DNA modifications: Function and applications in normal and disease states. Biology (Basel), 3(4), 670-723. doi:10.3390/biology3040670
Nizhnikov, M. E., Popoola, D. O., & Cameron, N. M. (2016). Transgenerational transmission of the effect of gestational ethanol exposure on ethanol use-related behavior. Alcohol Clin Exp Res, 40(3), 497-506. doi:10.1111/acer.12978
Popoola, D. O., Nizhnikov, M. E., & Cameron, N. M. (2017). Strain-specific programming of prenatal ethanol exposure across generations. Alcohol, 60, 191-199. doi:10.1016/j.alcohol.2017.01.002
Rose, J. (July 13 2017). Alcohol during pregnancy could have “transgenerational effects” study says, but don’t freak out. Retrieved from https://www.romper.com/p/alcohol-during-pregnancy-could-have-transgenerational-effects-study-says-but-dont-freak-out-68836