Huntington’s Disease; power and duty of parents over offsprings

Hunt­ing­ton’s Disease

Ba­sic facts about Hunt­ing­ton’s Disease:

  • Hunt­ing­ton’s Disease is an in­her­ited di­s­or­der that re­sults in death of brain cells.

  • Symp­toms usu­ally be­gin be­tween 30 and 50 years of age, death typ­i­cally oc­curs fif­teen to twenty years later.

  • A child of an af­fected per­son has a 50% chance of in­her­it­ing the dis­ease.

  • Di­ag­no­sis is by ge­netic test­ing, which can be car­ried out even in embryo

  • There is no cure.

Ge­netic gross negligence

I was listen­ing to a pod­cast about Hunt­ing­ton’s Disease. In the pod­cast, there was a man with HD talk­ing, and he said that his daugh­ter had already had 3 chil­dren and doesn’t want to test for HD, because

  1. If she tested HD-pos­i­tive, she would not have more chil­dren.

  2. She wants to have more chil­dren.

  3. Thus, she does not want to test for HD.

The child of a per­son with a 50% prior prob­a­bil­ity of hav­ing Hunt­ing­ton’s dis­ease, has a 25% prob­a­bil­ity of hav­ing Hunt­ing­ton’s dis­ease. As such, if par­ents have some le­gal duty to give their offspring a de­cent life, then for peo­ple with a high prob­a­bil­ity of Hunt­ing­ton’s Disease to have chil­dren with­out do­ing ge­netic test­ing first, could be con­sid­ered a form of gross neg­li­gence:

a con­scious, vol­un­tary act or omis­sion in reck­less dis­re­gard of a le­gal duty and of the con­se­quences to an­other party.

This prob­lem of gross neg­li­gence be­comes even stronger when one con­sid­ers the pos­si­bil­ity of em­bryo ge­netic test­ing and se­lec­tive abor­tion.

Be­hav­ioral as­pects of HD

In 2018, a woman sued doc­tors, be­cause they failed to tell her about her father’s fatal hered­i­tary dis­ease be­fore she had her own child.

What is quite in­ter­est­ing in this case is that

The woman’s father shot and kil­led his wife in 2007 and was con­victed of manslaugh­ter. Two years later, doc­tors at St Ge­orge’s Hospi­tal in south Lon­don found he had Hunt­ing­ton’s dis­ease and asked him to tell his daugh­ter about his con­di­tion and her risk of de­vel­op­ing it. But he re­fused to do so be­cause he thought she might abort the child she was car­ry­ing. The doc­tors ac­cepted his de­ci­sion.

The be­hav­ioral as­pects of HD are usu­ally the first signs of this dis­ease, and usu­ally di­ag­nosed as psy­chi­a­tric: The frontal cor­tex and the crim­i­nal jus­tice sys­tem (Sapolsky, 2000)

In a size­able per­centage of pa­tients, these mo­toric symp­toms are pre­ceded a few years ear­lier by dam­age to the frontal cor­tex and as­so­ci­ated changes in per­son­al­ity. Such changes typ­i­cally in­volve marked so­cial dis­in­hi­bi­tion, in­creases in ag­gres­sive­ness and hy­per­sex­u­al­ity, pat­terns of im­pul­sivity and poor so­cial judge­ment.

Pos­si­ble fit­ness of HD

HD has a sur­pris­ingly high level of prevalence (around 1 per 10000) de­spite its se­vere health con­se­quences. This sug­gests that HD might have some evolu­tion­ary fit­ness that keeps it in the gene pool.

The be­hav­ioral as­pects of HD noted in the last sec­tion plays well along the idea that peo­ple with HD have more chil­dren on av­er­age.

Power and duty of hu­man parents

Duty to offsprings

Preg­nant peo­ple are sub­ject to long lists of pro­hi­bi­tions and ad­vises, to provide the best womb-en­vi­ron­ment. They of­ten do it to them­selves, but peo­ple around them also do that, be­cause healthy offsprings is a so­cial good, and thus en­forc­ing the rules for mak­ing healthy offsprings is a so­cial norm.

This pre­na­tal norm en­force­ment can be seen as an ex­ten­sion of child-rais­ing norm en­force­ment. Par­ents are re­quired to give their chil­dren good food, shelter, ed­u­ca­tion, medicine, emo­tional sup­port, etc.

It’s strange how many re­stric­tions that preg­nant women are be­ing placed un­der: no al­co­hol, no thal­i­do­mide, no this no that, but 50% of Hunt­ing­ton’s gene? That’s pos­si­bly fine. This is odd.

An ex­ten­sion of the idea that par­ents have a duty to give their offsprings good lives, would give an ar­gu­ment for one form of eu­gen­ics as a duty of par­ents. Ju­lian Savulescu is one par­tic­u­lar ad­vo­cate:

Prin­ci­ple of Pro­cre­ative Benefi­cence (PB): cou­ples who de­cide to have a child have a sig­nifi­cant moral rea­son to se­lect the child who, given his or her ge­netic en­dow­ment, can be ex­pected to en­joy the most well‐be­ing.

Power over offsprings

As to the ex­po­sure of chil­dren, let there be a law that no de­formed child shall live. -- Aristotle

The moral sta­tus of hu­man fe­tuses and ba­bies is not uni­ver­sal among hu­mans. On one ex­treme, they are a spe­cial form of live­stock, host an­i­mals in which a per­son grad­u­ally grows. On an­other ex­treme, they are 100% per­son, com­plete with a true un­chang­ing self (some kind of pre­for­ma­tion­ism). In­ter­me­di­ate po­si­tions vary widely, and are of­ten used dur­ing abor­tion de­bates (Even though abor­tion de­bates are mo­ti­vated by moral emo­tions, they are played out via moral philoso­phies.).

I re­mem­ber read­ing a story about a fu­ture where peo­ple can live in­definitely from a ge­netic ther­apy be­fore birth. But this failed on a new­born hu­man, who would grow old and die in about 100 years. He be­came a global celebrity and his grace­ful death was tele­vised. This started a wave of peo­ple who re­quested for their chil­dren to not re­ceive the im­mor­tal­ity ge­netic ther­apy.

The story is a cel­e­bra­tion of an­ti­vac­ci­na­tion death cult, as well as illus­trat­ing a pop­u­lar philo­soph­i­cal ob­jec­tion to vac­ci­na­tion: it is un­nat­u­ral to be vac­ci­nated against nat­u­ral dis­eases.

I think this is con­nected. It shows that par­ents are thought to have a kind of to­tal pseu­do­ran­dom right over their offsprings, of­ten called “re­pro­duc­tive right”: a hu­man so­cial norm, whereby fer­tile hu­mans can mate and pro­duce offsprings any­where and in any man­ner, as long as they are “nat­u­ral”. Her­i­ta­ble dis­eases, her­i­ta­ble mor­tal­ity, they are all ge­netic and be­yond hu­man con­trol, and thus con­sid­ered nat­u­ral.