GENETIC AND GENOMIC HEALTHCARE 0

Genetic and Genomic Healthcare: Ethical Issues of Imortance to Nurses

Name of !tudent
Institution affiliation
GENETIC AND GENOMIC HEALTHCARE "
Genetic and Genomic Healthcare: Ethical Issues of Imortance to Nurses
Genetic Information and Privacy and Confidentiality for Patients
Genomic and #enetic research is a$in# the %a& for ne% areas of #reater in$ol$ement for
nurses in the rocess of critical decision'ma(in#) The increasin# le$el of inno$ation and
information on #enes and #enomes means that atients can no% ha$e more access to (no%led#e
a*out their #enome and #ene identit& as %ell as ercetions associated %ith these characteristics
+Lea, -00./) This imlies that nurses %ill no% ha$e to *e #raduall& more in$ol$ed in the
discussion of #enetics'related issues %ith their atients encomassin# all fields of healthcare
durin# the consent solicitin# rocess) The t%o areas %here nurses can #ain access to their
atients0 #enetic data and that re1uire informed decision ma(in# include re1uestin# for rele$ant
medical information and famil& histor&) These t%o are discussed in further detail)
Gathering Family Medical History Data
Nurses that ractice secialt& care in rimar& healthcare settin#s %ill consistentl& *e
in$ol$ed in #atherin# and anal&2in# data on atient famil& medical histories) Durin# this rocess,
the nurses #et the chance to e3ound on the nature and need for #atherin# medical histor& data
rior to see(in# a $er*al or %ritten consent from the atient for this rocedure +Lea, -00./) If
further information is re1uired from the atient0s relati$es, the nurse is also tas(ed %ith the
resonsi*ilit& of assurin# confidentialit& in the rocess of data #atherin# from additional famil&
mem*ers)
Obtaining Medical Information from Patient
In all healthcare ractice settin#s, it is the nurses %ho are #enerall& in$ol$ed in o*tainin#
the atients0 medical information as %ell as that of their famil& mem*ers) It is at this oint that
the nurse must clearl& e3lain the nature and use of the medical information *ein# solicited so
that the atient understands the imortance of ro$idin# accurate data that is necessar& in the
de$eloment of aroriate recommendations) In situations %here this information ro$es to *e
inade1uate, further research re#ardin# the #enetic data of other relati$es is re1uired) The nurse is
GENETIC AND GENOMIC HEALTHCARE -
also tas(ed %ith the resonsi*ilit& of facilitatin# the %ritten consents of release of relati$es0
medical records)
Definition of Privacy according to ANA Code of Ethics
In ro$ision 4)" of the American Nurses Association Code of Ethics, the nurse is tas(ed
%ith the resonsi*ilit& to safe#uard the ri#ht of the atient to ri$ac&) This is *ecause the need
for health care does not $alidate unermitted intrusion into the atient0s ri$ate life) 5ri$ac& is
descri*ed in the Code of Ethics stiulated *& the ANA as the ri#ht of the atient to control their
o%n ersonal information, *od&, and actions) Additionall&, confidentialit& is descri*ed as the
nurse6s o*li#ation not to disclose as %ell as to rotect ersonal information ro$ided *& the
atient +7o%ler, -0"0/) Ho%e$er, it is imortant to note that #enetic data o*tained from screenin#
as %ell as famil& histor& ma& un$eil information a*out the indi$idual0s famil& otential health
ris(s, of %hich these relati$es ma& *e una%are and ma& need to *e informed a*out)
he ANA Code of Ethics as a G!ideline for N!rses in Case of Ethical Conflict
As a nurse, it is imortant to *e a%are of the %ider societal ri$ac& and confidentialit&
concerns) The ethical *one of contention in this case is the ri#ht of atients to %ithhold
information from their famil& mem*ers desite the otential dan#ers this action ma& ha$e on
their health) Accordin# to the 8)!) Constitution, the #uidin# rinciles %hen faced %ith ethical
decisions are autonom&, 9ustice, *eneficence, $eracit&, and nonmaleficence +McCormic(, -0""/)
This means that accordin# to the rincile of autonom&, the nurse has the dut& to allo% the
atient to ma(e his or her decisions) Ho%e$er, the rinciles of *eneficence and nonmaleficence,
%hich are usuall& aired, dictate that rofessionals ha$e the dut& to do #ood and not to do harm
resecti$el&)
Due to these rinciles, an ethical dilemma resents itself to the nurse and the healthcare
ro$iders in the scenario %here the atient ots to %ithhold #enetic information %hen it ma& *e
of *enefit to their famil& mem*ers0 health) :hen such a dilemma occurs, it is of $ital imortance
that the nurse escalates this issue to the Ethics ;oard of their or#ani2ation in accordance to the
GENETIC AND GENOMIC HEALTHCARE 4
rinciles set in the ANA Code of Ethics for Nurses) The code mandates that the nurse should
resent the case in %ritin# throu#h a suer$isor in #ood time rior to the ne3t Ethics ;oard
meetin#) After the ;oard con$enes, the case is deli*erated uon, and then the reort is rela&ed to
the nurse throu#h the suer$isor for action +Du#as, -00</)
"egal #tat!s of N!rses to Contravene the Confidentiality Cla!se in Matters of Disclos!re of
$elevant Genetic Information that may %enefit Patient&s Family
The nurse *ears no le#al authorit& to contra$ene the confidentialit& afforded *& the client'
nurse relationshi) Accordin# to the ANA Code of Ethics, this confidentialit& holds sureme in
all cases *ut in cases of ethical conflict, it is ad$ised that the nurse see(s further assistance from
her seniors on ho% to handle the indi$idual case) In the nursin# ractice, this is a common issue
that *rin#s a*out issues of ethical contention) In most cases, it is imortant that nurses use their
moral 9ud#ment and ne#otiatin# tact to tr& and con$ince the atient of the imortance of
di$ul#in# critical information desite the issues that ma& *e re$ailin#) This should *e the first
course of action *efore the issue is escalated to a suer$isor or an e3erienced mem*er of the
healthcare or#ani2ation) If all attemts at con$incin# the atient fail, then the nurse ma& consider
other ethicall& sound a$enues of resol$in# this conflict that %ill not necessaril& *reach the
atient'nurse confidentialit& status)
$ecommendations for Actions 'hen a Patient 'ithholds Genetic Information from Family
Members
There are se$eral models for moral and ethical decision ma(in# that ha$e *een de$eloed
for the nursin# rofession) These models are rele$ant in situations of conflict such as %hen a
atient deli*eratel& intends to %ithhold information from famil& mem*ers desite the otential
ris(s in$ol$ed due to misunderstandin#s and strife) These include the sa$a#e model for
facilitatin# ethical decision ma(in# and the ACT Model *& Graham'Eason +Conle& et al), -0"4/)
These t%o models are mostl& used to resol$e ethical conflicts in re#ards to atients0 ri#hts to
GENETIC AND GENOMIC HEALTHCARE =
ri$ac& and confidentialit&) The& *oth follo% the same rinciles) 7irst, it is ad$ised that all facts
concernin# the case must *e #athered and all sta(eholders en#a#ed includin# care #i$ers, famil&
mem*ers, and the healthcare or#ani2ation from the onset) !econd, re$ie% the ethical rinciles
that al& to the conflict) 7inall&, the contentious issues arisin# must *e discussed %ith the (e&
sta(eholders) Ideall&, it is ad$isa*le to in$ol$e the or#ani2ation0s ethics committee to act as a
neutral facilitator in these deli*erations)
$es(ect for Patient&s Confidentiality and N!rse&s Moral D!ty to Advise Patient&s $elatives
abo!t Potential Health $is)s
The nursin# rofession is ro#ressi$el& incororatin# #enetics in its shere of care,
includin# the resultin# ethical considerations) It is therefore imortant to areciate the fact
nurses %ill *e faced %ith issues of ethical conflict in da& to da& erformance of their duties)
Nurses %ill increasin#l& ta(e art in dia#nosis, #enetic screenin#, and care for atients
under#oin# related treatment) More imortantl&, nurses %ill rel& hea$il& on atients0 #enetic
information in their de$eloment of healthcare lans and ro$ision of #enetics'*ased re$ention
and treatment) Accordin# to 7o%ler +-0"0/ the ANA Code of Ethics, nurses are o*li#ated to>
a*o$e all else, resect the atient0s ri#ht to confidentialit&) !ince #enetic and #enomic
information has a direct imact on the future health and %ellness of the atient0s relati$es, it
*ecomes imerati$e that an& information considered rele$ant *e di$ul#ed to the concerned
arties) :ith this t%o conflictin# scenarios, the nurse must decide %hich of the t%o ta(es
recedence o$er the other)
The (no%led#e of *oth the current as %ell as emer#in# #enetic and #enomic ethical
issues is of utmost imortance to racticin# nurses) On the one hand, nurse'atient
confidentialit& is amon# the ethical cornerstones of the nursin# ractice) On the other, the ethical
dut& to do #ood and as %ell as to do no harm must *e uheld %ith e1ual re#ard) :hen a decision
is resented that *rin#s these t%o asects into conflict, the nurse must act in a %a& that allo%s
GENETIC AND GENOMIC HEALTHCARE <
the ma(in# the roer decision %ithout *rea(in# either of the conflictin# rinciles) As an initial
ste, nurses ou#ht to anal&2e their ersonal ethical concerns and *eliefs in re#ard to such
conflicts of interest) !econd, it is imortant that nurses de$elo a frame%or( for ethical
assessment that suorts them in decision ma(in# as %ell as in the deli$er& of roer #enetic and
#enomic healthcare)
!e$eral scholars ad$ocate for nurses to %or( to%ards inculcatin# these ethical
cometencies into healthcare, research, and nursin# education +Cal2one et al), -0""/) It is also of
e1ual imortance for nurses to familiari2e themsel$es %ith the resources that %ill aid in the
incororation of #enetic treatment and the associated ethical issues that ma& arise in their
e$er&da& routines) Inte#ratin# these $ital ethical cometencies in the nursin# rofession %ill
ensure that the care #i$ers offer 1ualit& and morall& aroriate ser$ices in the current era of
#enetic and #enomic healthcare)
Im(act of Genetic Information on Individ!als and their #ocietal Perce(tions
:hen erson recei$es information on their #enetic screenin#, this (no%led#e has *een
(no%n to e3ose them to $arious ris(s that ma& *e of a social, s&cholo#ical or financial nature)
7or instance a arent runs the s&cholo#ical ris( of arental #uilt if he or she disco$ers that the&
carr& a defecti$e #ene) Additionall&, an indi$idual dia#nosed %ith a condition that is of a #enetic
nature ma& suffer from lo% self'esteem and ris( *oth emlo&ment and insurance discrimination)
7rom a societal ersecti$e, the increased accessi*ilit& to #enetic information is chan#in# ho%
humanit& $ie%s itself in relation to the uni$erse +McCormic(, -0""/) This is also *rin#in# a*out
some chan#es in our current reli#ious *eliefs and hilosohies)
This (no%led#e of #enetic information is also ro$in# to *e *eneficial in cases of earl&
detection of conditions such as homoc&stinuria and sic(le cell anemia in ne%*orns) ?no%led#e
of an infant0s #enetic condition carrier status *ears the rosecti$e *enefit of lettin# the arents
areciate the ris(s associated %ith future re#nancies earl& on) Contrastin#l&, earl&
GENETIC AND GENOMIC HEALTHCARE @
identification of infants as carriers of defecti$e #enes ma& result in misinterretation and
misunderstandin# *& the arents and could affect the arent'child relationshi, not to mention the
ossi*ilit& of societal discrimination) Due to these otential ris(s, the Institute of Medicine and
the American Academ& of 5ediatrics recommend that ne%*orns should not *e su*9ected to
screenin# solel& for the uroses of identif&in# their #enetic carrier status +McCormic(, -0""/)
7indin#s of defecti$e #ene carrier status that are ac1uired incidentall& durin# the normal infant
screenin# rocess should onl& *e shared %ith the consentin# arents %ho must ha$e under#one
counselin# *eforehand +;runner, -00./)
Essentiall&, most #enetic conditions remain difficult to re$ent or treat and this means
that (no%led#e of an indi$idual0s #enetic status ma& *e of little or no $alue in relation to
treatment) Due to these concerns, the most imortant characteristics of an& #enetic testin#
e3ercise should include informed consent, thorou#h counselin# and confidentialit& +Du#as,
-00</) In most states, there are mandator& screenin# ro#rams for infants %hich re1uire all
ne%*orns to test unless there is a lac( of arental consent +Conle& et al), -0"4/) This is referred
to as informed dissent, %ith ne#li#i*le information #i$en to the infant0s arents) Informed
consents for infants screenin#, ho%e$er, entail the rocess of informin# arents a*out *enefits,
limitations, and ris(s in$ol$ed *efore roceedin# %ith the screenin#) This informed consent
rocess resents a #ood oortunit& for efficient and romt resonses to the results o*tained,
irresecti$e of %hether the& are ositi$e or ne#ati$e)
GENETIC AND GENOMIC HEALTHCARE A
References
7o%ler, M) +-0"0/) Guide to the Code of Ethics for Nurses: Interpretation and Application +)
"B./) !il$er !rin#, MD: American Nurses Association)
;runner, L) +-00./) Brunner & Suddarth's textbook of medicalsur!ical nursin! +""th ed)/)
5hiladelhia, 5A: Liincott :illiams C :il(ins)
Cal2one, ?), Cashion, A), 7eetham, !), Den(ins, D), 5ro%s, C), :illiams, D), C :un#, !) +-0""/)
Nurses Transformin# Health Care 8sin# Genetics And Genomics) Nursin! "utlook#
$%+"/, -@'4<)
Conle&, E), ;iesec(er, L), Gonsal$es, !), Mer(le, C), ?ir(, M), C Aoui2erat, ;) +-0"4/) Current
and Emer#in# Technolo#& Aroaches in Genomics) &ournal of Nursin! Scholarship#
'$+"/, <'"=)
Du#as, R) +-00</) Nursin# and Genetics: Al&in# the American Nurses Association6s Code of
Ethics) &ournal of (rofessional Nursin!# )*+-/, "04'""4)
Lea, D) H), +-00./) Genetic and Genomic Healthcare: Ethical Issues of Imortance to Nurses)
+he "nline &ournal of Issues in Nursin!, *,+"/) Retrie$ed from
htt:FF%%%)nursin#%orld)or#FMainMenuCate#oriesFANAMar(etlaceFANA5eriodicalsFO
DINFTa*leofContentsFGol"=-00BFNo-Ma&0BFArticles'5re$ious'ToicsFThe'Genetic'
Information'Nondiscrimination'Act'GINA)html
McCormic(, M) D), +-0""/) Ethical Concerns a*out Genetic !creenin#: The Do%n6s Dilemma)
+he &ournal for Nursin! (ractitioners# -+=/, .@4'.A0)